(I hope this makes sense as it is very late and I am very tired!!)
We hope everyone had a great Thanksgiving! Our was very low-key and we were very happy about it! We were so thankful to have our entire family home together as we spent last Thanksgiving in the hospital with Lexi. We were able to put up a Christmas tree this year and even bake some cookies with the twins. We tried to stop and thank God for the many blessings- big and small that we have experienced this year. In spite of the obstacles we have also faced, WE ARE THANKFUL for a beautiful baby girl that has made it through a difficult year!
Many of you that follow the blog are probably wondering how eye surgery went. It didn't happen! We went to the Clinic for pre-op, got clearance from cardiology, basically all the "red tape" stuff. 4 days before surgery, the opthomologist office called and said they are postponing her eye surgery until she can see the neuro-surgeon. The opthomologist strongly feels the Lexi needs brain surgery and that her chairi malformation is what is causing her eyes to turn in. The earliest we can get in to nuero is January 11th becaused the Dr is gone for 3 weeks in December. So, we wait.
We saw our local hospital pediatrician this week, however, and he really feels Lexi's eyes need fixed now as they have become more cross-eyed and he is concerned her vision will be affected. He is recommending we take her to the opthomology department at Cincinnati Children's Hospital. If we wait for Cleveland Clinic, it will most likely be March before we can get her back in. We are PRAYING that the neuro-surgeon decides against brain surgery and would much prefer Lexi to just have a much more simple eye procedure done instead. We are confused and frustrating and in need of some guidance!
We made the 1st of our weekly December trips today. We saw an allergist and we're glad we did! We found out the Lexi is allergic to milk and eggs (poor baby- what else can she have??). So, they will be moving her to a soy-based diet immediately. We then had lab work done for endocrinology (to check her thyroid issues) and more tests for allergy. They are looking into how severe her allergies are and are also checking her liver. Lexi scratches herself to the point of drawing blood and they are trying to get to the bottom of this. We have also been asked to bathe her with special lotions and put a more potent lotion on her daily. We have deemed Lexi our "diva" as this lotion cost $6 an ounce! The cheap Johnson and Johnson just isn't good enough for the little princess (but she's worth it!).
Finally, we had another session with the eating clinic. They did an oral-motor- evaluation on her today. Lexi has very low tone in her face. Her bottom lip is too loose and her top lip is too tight. This both are issues in feeding. I asked them to be up-front with me about our game plan and Lexi's prognosis. The difficult thing is that no one knows if Lexi will fully recover from her facial nerve damage. At this point, they said it will be "a very long time" before she is able to eat completely on her own without the G-tube. The best thing we can do is oral stretches and try to get her to become consistent and not develop food aversions. The good news, however, is that she gained the appropriate amount of weight for the first time ever!! Yeah!! She is a whopping 17lbs 10 oz!
Prayer Requests:
Please pray for wisdom for Jon and I as we decide what to do about Lexi's eye surgery. Do we get a 2nd opinion and add another hospital and another doctor to the mix?? Pray that the 3 doctors- neurology (very against brain surgery), opthomology (strongly pushing for brain surgery) and neuro-surgery (yet to really weigh in) can all agree on the best treatment for Lexi.
Pray for me, Lexi, and my various family members as we make weekly trips to Cleveland. We go 6 times from now until January 11th. Pray for safe travel as the snow begins in Cleveland! Next week, we will see the feeding clinic, ENT (ear,nose and throat) and a neuro-sleep doctor to begin the process for her 24 hour PH probe and sleep study.
Thank you all for your continued prayers. It is a long and exhausting road with Lexi but her sweet little smiles and adorable personality make it all worth it!
Thursday, December 3, 2009
Tuesday, November 17, 2009
November 17th- one-year after heart surgery
It's hard to believe that Lexi had her open-heart surgery exactly one year ago. And, she turned one on October 28th! Although there are still so many things she can't do, looking at how far she's come- from being near death (and that's not an exaggeration)a year ago, to cooing and kicking and even sometimes smiling, we are so thankful for every little thing that Lexi accomplishes. We are still praying and believing that she will gain full recovery from the complications of her heart surgery!
We went to Cleveland Clinic today for 3 appointments. Lexi had a reflux study this morning. They placed a die into her G-tube and then watched how her stomach emptied for an hour. Lexi did so well! She had to lay flat on her back wrapped in a papoose for an hour! She only cried for a few minutes the entire hour- she's a champ! We will get the results of the test next week. The GI doctor wants to make sure that everything is emptying the right direction and make sure it's not coming back up her esophagus.
We then had our first feeding clinic appointment. The team watched me feed Lexi and then gave us a new "routine" to follow for her feeding. This is quite different from what we've been doing and will definitely take a little getting used to. Lexi is also only gaining about 4 grams a day, which is about half of what she should be. So, they are trying to find ways for her to tolerate her feeds better and take more in each feed. Typically, however, when we've tried to give her more, she has severe reflux. Hopefully the study from this morning will give us some more answers to help her gain sufficient weight!
Finally, we met with opthomology for her pre-op appointment. Lexi's surgery is scheduled for this coming Monday, November 23rd. We won't find out the time until Friday afternoon, but it will most likely be in the morning. If everything goes very well, they may let her come home Monday! We'll keep everyone posted on the blog about the time and definitely after her surgery.
Lastly, we finally have an appointment scheduled with the neuro-surgeon in January. We will be very anxious to hear his thoughts as there is much debate about Lexi's symptoms and her chiari malformation!
Please pray for:
Lexi's upcoming surgery. Pray for wisdom and steady hands for the doctor. Pray that her eyes are not over-corrected, which would result in an additional surgery. Pray the her ride home and her first few days at home go smoothly as she is not to be jostled for several days!
Pray for the Hocanson family as Jon's grandfather passed away on Sunday evening.
Finally, pray for me, Lexi and my various family members that travel with me to Cleveland. We have at least one trip a week (with 2-3 appts per trip) from now until January 14th. We go November 23rd & 30th, December 3rd, 9th, 14th, 22nd, January 5th and 14th. Pray for safe traveling through the winter months and that Lexi and I manage the lengthy days away!
I hope to post some pictures from Lexi's first birthday this week so check back!!
We went to Cleveland Clinic today for 3 appointments. Lexi had a reflux study this morning. They placed a die into her G-tube and then watched how her stomach emptied for an hour. Lexi did so well! She had to lay flat on her back wrapped in a papoose for an hour! She only cried for a few minutes the entire hour- she's a champ! We will get the results of the test next week. The GI doctor wants to make sure that everything is emptying the right direction and make sure it's not coming back up her esophagus.
We then had our first feeding clinic appointment. The team watched me feed Lexi and then gave us a new "routine" to follow for her feeding. This is quite different from what we've been doing and will definitely take a little getting used to. Lexi is also only gaining about 4 grams a day, which is about half of what she should be. So, they are trying to find ways for her to tolerate her feeds better and take more in each feed. Typically, however, when we've tried to give her more, she has severe reflux. Hopefully the study from this morning will give us some more answers to help her gain sufficient weight!
Finally, we met with opthomology for her pre-op appointment. Lexi's surgery is scheduled for this coming Monday, November 23rd. We won't find out the time until Friday afternoon, but it will most likely be in the morning. If everything goes very well, they may let her come home Monday! We'll keep everyone posted on the blog about the time and definitely after her surgery.
Lastly, we finally have an appointment scheduled with the neuro-surgeon in January. We will be very anxious to hear his thoughts as there is much debate about Lexi's symptoms and her chiari malformation!
Please pray for:
Lexi's upcoming surgery. Pray for wisdom and steady hands for the doctor. Pray that her eyes are not over-corrected, which would result in an additional surgery. Pray the her ride home and her first few days at home go smoothly as she is not to be jostled for several days!
Pray for the Hocanson family as Jon's grandfather passed away on Sunday evening.
Finally, pray for me, Lexi and my various family members that travel with me to Cleveland. We have at least one trip a week (with 2-3 appts per trip) from now until January 14th. We go November 23rd & 30th, December 3rd, 9th, 14th, 22nd, January 5th and 14th. Pray for safe traveling through the winter months and that Lexi and I manage the lengthy days away!
I hope to post some pictures from Lexi's first birthday this week so check back!!
Monday, October 19, 2009
Monday, October 19- Exhausted!
We had an extremely exhausting week last week! I feel like we are just now beginning to recover. My parents and I spent 2 days in Cleveland this past Tuesday and Wednesday. On Tuesday, we left the house at 6am for our first appointment at 9am. Here is a brief synopsis of all of Lexi's appointments and the MANY tests/surgeries that will be happening in the next few months:
Opthomology- Lexi's eyes are still significantly turned in. The Opthomologist is insistent that this is related to her chiari malformation. He is highly recommending we see nuero-surgery personally. However, since no brain operation is planned in the near future, Dr. Rychwalski, the opthomologist, will be doing corrective eye surgery for Lexi on Monday, November 23rd. We have a few pre-op appointments prior to surgery as Lexi has to get "clearance" from several departments before surgery. She will hopefully only be in the hospital for one day and then "uncomfortable" at home for 2-3 weeks with swollen/bloody eyes.
Cardiology- this was actually our easiest appointment. Lexi had an EKG and echocardiogram and did great for both of these! We also saw the cardiologist who said her 2 narrowings are still "moderate" and there are no surgeries needed in the near future. We will see cardiology again in 3 months. The most ironic thing, however, is that the thing that started this- Lexi's heart- is the least of our concerns now!
Dietician- Lexi if FINALLY gaining the right amount of weight. The dietician spent some time trying to recalculate her formula again to make sure she's gaining the right grams per day. They have significantly increased her caloric intake and Lexi has finally reached 17lbs! The dietician is also having Lexi see an allergist as they are concerned she might have some food allergies and a milk allergy.
Swallow Study- on Wednesday morning, Lexi had a swallow study. She, as our luck has it, woke up vomiting on Wednesday morning. So, her swallow study didn't go exceptionally well. She accomplished 7 swallows of thin liquids and, although she did not aspirate, they felt this was too limited of a study to give any further recommendations. From what the speech pathologist did see, she did not feel there was any improvement in Lexi's swallowing from 6 months ago.
Feeding Clinic- we then had a 3 hour session at the feeding clinic. We were extremely impressed with the thoroughness and level of professionalism! We met with a developmental pediatrician who said Lexi is a very "floppy" baby (but super cute!!). We then met with a clinical psychologist that runs the clinic, another dietician and an Occupational Therapist that specializes in feeding. They "interviewed" me for about an hour and then watched a feeding session with Lexi behind a 2-way mirror. After the feeding session, we met back again. The results- they feel that Lexi has "no clue" when it comes to eating. Her cranial nerve damage has had significant impact on her eating skills. And, the longer she goes without being able to eat orally, the more severe this will become. Lexi is also starting to develop some behavior aversions to eating. This is also a huge concern with the clinic. The clinic has never seen a child with Lexi's "condition" so this will be a trial and error treatment. They would like to see Lexi every one to two weeks!!! While this is a HUGE task for our family to take on, we really feel like it is what is best for Lexi. The Cleveland Clinic feeding clinic is one of very few clinics that specialize in feeding. So, we will do what Lexi needs to get better!
GI- after our lengthy feeding clinic, we finished up with GI. This was another intense appointment. The feeding clinic feels that Lexi has some additional GI issues, especially her reflux. So, they sent a staff memo to Dr. Mohr, the GI doctor, asking that she get very serious and aggressive with Lexi's GI issues. Unfortunately, they have done everything they can with medicine to treat Lexi's reflux, so the only other options would be surgery. However, they want to be sure they have "figured out" Lexi's issues before proceeding with any type of surgery. So, they are doing the following:
Lexi will be seeing another neurologist and we will be doing a sleep study. During the study, they will put a small probe down her stomach to watch her reflux and see how her stomach empties during sleep. We will be at the clinic for 24 hours for this.
Lexi will be having an "emptying" procedure done on November 17th where they will fill her stomach and then watch how it empties for 1 hour. This will help them know that everything is heading the right direction and not coming back up her esophagus.
Finally, Lexi will be seeing the Airway Clinic. This clinic consists of a polmonologist, ENT and GI doctor. They will be sure that Lexi's airway is safe and there are no other underlying issues.
Whew! I told you it was a crazy 2 days! I know it may be more information that you want. However, many had asked how her appointments went and this is the most concise I can get!:-)
Prayer Requests:
Perhaps the most difficult outcome of these appointments is realizing that Lexi's condition is not going to get better any time soon (but we are STILL praying for that Miracle!). We know God CAN heal but it will be in His timing (which is the often the hardest part!). When we came home from the hospital, we were thinking it may be a year or so. Now that we are approaching a year, we are adding even more doctors, surgeries, etc. We are exhausted. Please pray for strength and extreme success in time management. I do 4 "side jobs" to help bring in extra money- I teach piano lessons, sell Tastefully Simple 2-4 nights a week, work at my dad's office 1 1/2 days a week, and direct Children of the Light on Sundays. This is becoming very difficult to manage. But, it keeps me home 3-4 days a week to take Lexi to all her appointments and spend time with the twins.
Pray for Lexi's upcoming appointments and eye surgery. Pray for wisdom for the doctors and "continuity of care" between the many departments that are working with Lexi at the Cleveland Clinic.
Opthomology- Lexi's eyes are still significantly turned in. The Opthomologist is insistent that this is related to her chiari malformation. He is highly recommending we see nuero-surgery personally. However, since no brain operation is planned in the near future, Dr. Rychwalski, the opthomologist, will be doing corrective eye surgery for Lexi on Monday, November 23rd. We have a few pre-op appointments prior to surgery as Lexi has to get "clearance" from several departments before surgery. She will hopefully only be in the hospital for one day and then "uncomfortable" at home for 2-3 weeks with swollen/bloody eyes.
Cardiology- this was actually our easiest appointment. Lexi had an EKG and echocardiogram and did great for both of these! We also saw the cardiologist who said her 2 narrowings are still "moderate" and there are no surgeries needed in the near future. We will see cardiology again in 3 months. The most ironic thing, however, is that the thing that started this- Lexi's heart- is the least of our concerns now!
Dietician- Lexi if FINALLY gaining the right amount of weight. The dietician spent some time trying to recalculate her formula again to make sure she's gaining the right grams per day. They have significantly increased her caloric intake and Lexi has finally reached 17lbs! The dietician is also having Lexi see an allergist as they are concerned she might have some food allergies and a milk allergy.
Swallow Study- on Wednesday morning, Lexi had a swallow study. She, as our luck has it, woke up vomiting on Wednesday morning. So, her swallow study didn't go exceptionally well. She accomplished 7 swallows of thin liquids and, although she did not aspirate, they felt this was too limited of a study to give any further recommendations. From what the speech pathologist did see, she did not feel there was any improvement in Lexi's swallowing from 6 months ago.
Feeding Clinic- we then had a 3 hour session at the feeding clinic. We were extremely impressed with the thoroughness and level of professionalism! We met with a developmental pediatrician who said Lexi is a very "floppy" baby (but super cute!!). We then met with a clinical psychologist that runs the clinic, another dietician and an Occupational Therapist that specializes in feeding. They "interviewed" me for about an hour and then watched a feeding session with Lexi behind a 2-way mirror. After the feeding session, we met back again. The results- they feel that Lexi has "no clue" when it comes to eating. Her cranial nerve damage has had significant impact on her eating skills. And, the longer she goes without being able to eat orally, the more severe this will become. Lexi is also starting to develop some behavior aversions to eating. This is also a huge concern with the clinic. The clinic has never seen a child with Lexi's "condition" so this will be a trial and error treatment. They would like to see Lexi every one to two weeks!!! While this is a HUGE task for our family to take on, we really feel like it is what is best for Lexi. The Cleveland Clinic feeding clinic is one of very few clinics that specialize in feeding. So, we will do what Lexi needs to get better!
GI- after our lengthy feeding clinic, we finished up with GI. This was another intense appointment. The feeding clinic feels that Lexi has some additional GI issues, especially her reflux. So, they sent a staff memo to Dr. Mohr, the GI doctor, asking that she get very serious and aggressive with Lexi's GI issues. Unfortunately, they have done everything they can with medicine to treat Lexi's reflux, so the only other options would be surgery. However, they want to be sure they have "figured out" Lexi's issues before proceeding with any type of surgery. So, they are doing the following:
Lexi will be seeing another neurologist and we will be doing a sleep study. During the study, they will put a small probe down her stomach to watch her reflux and see how her stomach empties during sleep. We will be at the clinic for 24 hours for this.
Lexi will be having an "emptying" procedure done on November 17th where they will fill her stomach and then watch how it empties for 1 hour. This will help them know that everything is heading the right direction and not coming back up her esophagus.
Finally, Lexi will be seeing the Airway Clinic. This clinic consists of a polmonologist, ENT and GI doctor. They will be sure that Lexi's airway is safe and there are no other underlying issues.
Whew! I told you it was a crazy 2 days! I know it may be more information that you want. However, many had asked how her appointments went and this is the most concise I can get!:-)
Prayer Requests:
Perhaps the most difficult outcome of these appointments is realizing that Lexi's condition is not going to get better any time soon (but we are STILL praying for that Miracle!). We know God CAN heal but it will be in His timing (which is the often the hardest part!). When we came home from the hospital, we were thinking it may be a year or so. Now that we are approaching a year, we are adding even more doctors, surgeries, etc. We are exhausted. Please pray for strength and extreme success in time management. I do 4 "side jobs" to help bring in extra money- I teach piano lessons, sell Tastefully Simple 2-4 nights a week, work at my dad's office 1 1/2 days a week, and direct Children of the Light on Sundays. This is becoming very difficult to manage. But, it keeps me home 3-4 days a week to take Lexi to all her appointments and spend time with the twins.
Pray for Lexi's upcoming appointments and eye surgery. Pray for wisdom for the doctors and "continuity of care" between the many departments that are working with Lexi at the Cleveland Clinic.
Thursday, October 1, 2009
October 1- Results
We made two trips to Cleveland in 5 days. My mom and I took Lexi on Friday for another MRI. This was of her spinal column. Lexi did well (although they once again had a really difficult time with her IV). But, she was only poked 14 times so they are improving! The neurology nurse called on Monday and said that the results came back normal! Praise the Lord! This means Lexi does not have a tethered spinal cord and there is not spinal fluid build-up. She then set-up an appointment for us to see the neurologist, Dr. Friedman, on Tuesday.
On Tuesday, Jon took the afternoon off work and we headed over to be sure that we both received answers to a lot of questions. Dr Friedman is a fantastic doctor and is very thorough. He spend an hour with us talking to us and examining Lexi. It appears the Lexi, once again, is a bit of an "anomaly." Neurologists have always assumed that you are born with a chiari malformation (this herniation of the brain stem). But, Lexi was not. Her MRI results only 5-6 months apart and very different. This has "stumped" even the neurosurgery team. Because of this malformation suddenly occurring, they would like to wait and see what happens with it. This is good news for our family as it means they will not be doing brain surgery immediately. Lexi does has some fluid build-up on one side of her cerebellum that they will keep a close eye on. We will see the neurologist again in 3 months and if her symptoms have not changed, we will wait and do another MRI in 6 months. At that time (either in 3 or 6 months) we will see what the neuro surgeon thinks about surgery.
Perhaps the most difficult and frustrating thing for Jon and I is this- all of Lexi's symptoms are symptoms of a Chiari malformation, which means they would typically do surgery immediately. But, since these symptoms occurred immediately after heart surgery and the chiari is new, none of them are related! Ahh! So, they are telling us to watch out for symptoms- what symptoms?? She has all of them!! Dr. Friedman said we should make sure her symptoms are getting better and not worse. So, we have to keep a very close eye on Lexi and write down any unusual things she might do. This is very stressful for a parent!
We again asked Dr. Friedman what might have caused all of these symptoms- reduced blink, swallowing difficulties, facial nerve damage. He honestly has no idea but can definitely narrow down that something happened between the time she went into surgery and the time she woke up 6 days later. Unfortunately, no one knows exactly what happened. As you can imagine, this is so hard to us as parents to not have any answers as to what happened to our sweet little Lexi!
Finally. Dr. Friedman is concerned about Lexi's very slow development. She is significantly behind. She is 11 months old and is about the development of a 4 to 5 month old. However, the reassuring part is that he thinks she will eventually get there. Lexi has a lot of strikes against her. But, she is a fighter and Jon and I are fighters. We are DETERMINED to get her better. We are praying that we will see huge leaps in her development as, hopefully, her nerves continue to heal.
Prayer Requests:
Pray for Lexi's Chiari malformation and that her symptoms do not get worse. With her heart defects, brain surgery would be a bit more dangerous for her. Pray that we do not have to have brain surgery ever!
Pray for Lexi's eyes. Since nuero surgery is not going to operate in the next 3 months, it's back to Opthomology for (most likely) surgery. Pray for wisdom for the doctors.
Pray for my parents, Lexi and I as we travel to Cleveland October 13th and 14th for 2 full days of appointments. I believe we have 9 appointments (including 2 heart tests and a 3 hour feeding clinic appointment).
Finally, pray for Jon and I as we re-work our budget. Each trip to Cleveland (When we don't spend the night) cost us about $75-$100 with meals, gas, parking, tolls, etc. Going from a 2 income to 1 income family has finally caught up to us and we are coming up short every month. Pray that we can find and make the necessary cuts for me to be able to stay home with Lexi! This is probably our biggest burden at the moment!
On Tuesday, Jon took the afternoon off work and we headed over to be sure that we both received answers to a lot of questions. Dr Friedman is a fantastic doctor and is very thorough. He spend an hour with us talking to us and examining Lexi. It appears the Lexi, once again, is a bit of an "anomaly." Neurologists have always assumed that you are born with a chiari malformation (this herniation of the brain stem). But, Lexi was not. Her MRI results only 5-6 months apart and very different. This has "stumped" even the neurosurgery team. Because of this malformation suddenly occurring, they would like to wait and see what happens with it. This is good news for our family as it means they will not be doing brain surgery immediately. Lexi does has some fluid build-up on one side of her cerebellum that they will keep a close eye on. We will see the neurologist again in 3 months and if her symptoms have not changed, we will wait and do another MRI in 6 months. At that time (either in 3 or 6 months) we will see what the neuro surgeon thinks about surgery.
Perhaps the most difficult and frustrating thing for Jon and I is this- all of Lexi's symptoms are symptoms of a Chiari malformation, which means they would typically do surgery immediately. But, since these symptoms occurred immediately after heart surgery and the chiari is new, none of them are related! Ahh! So, they are telling us to watch out for symptoms- what symptoms?? She has all of them!! Dr. Friedman said we should make sure her symptoms are getting better and not worse. So, we have to keep a very close eye on Lexi and write down any unusual things she might do. This is very stressful for a parent!
We again asked Dr. Friedman what might have caused all of these symptoms- reduced blink, swallowing difficulties, facial nerve damage. He honestly has no idea but can definitely narrow down that something happened between the time she went into surgery and the time she woke up 6 days later. Unfortunately, no one knows exactly what happened. As you can imagine, this is so hard to us as parents to not have any answers as to what happened to our sweet little Lexi!
Finally. Dr. Friedman is concerned about Lexi's very slow development. She is significantly behind. She is 11 months old and is about the development of a 4 to 5 month old. However, the reassuring part is that he thinks she will eventually get there. Lexi has a lot of strikes against her. But, she is a fighter and Jon and I are fighters. We are DETERMINED to get her better. We are praying that we will see huge leaps in her development as, hopefully, her nerves continue to heal.
Prayer Requests:
Pray for Lexi's Chiari malformation and that her symptoms do not get worse. With her heart defects, brain surgery would be a bit more dangerous for her. Pray that we do not have to have brain surgery ever!
Pray for Lexi's eyes. Since nuero surgery is not going to operate in the next 3 months, it's back to Opthomology for (most likely) surgery. Pray for wisdom for the doctors.
Pray for my parents, Lexi and I as we travel to Cleveland October 13th and 14th for 2 full days of appointments. I believe we have 9 appointments (including 2 heart tests and a 3 hour feeding clinic appointment).
Finally, pray for Jon and I as we re-work our budget. Each trip to Cleveland (When we don't spend the night) cost us about $75-$100 with meals, gas, parking, tolls, etc. Going from a 2 income to 1 income family has finally caught up to us and we are coming up short every month. Pray that we can find and make the necessary cuts for me to be able to stay home with Lexi! This is probably our biggest burden at the moment!
Monday, September 14, 2009
September 14th- The Waiting Game
It appears as though we are now at a brief waiting point with Lexi. The neurologist spoke with the neurosurgeon last Thursday and they would like to do yet another MRI. This one will be on Lexi's lower brain and spinal cord. They want to make sure there is no build-up of spinal fluid and/or they want to rule out the possibility of a tethered spinal cord. So, Lexi has an MRI scheduled for Friday, September 25th. She will have to go through the exact same steps she did 2 weeks ago with full sedation, IVs and a vent. If there is no spinal fluid build-up and her spinal cord is not tethered, they are hoping to put off surgery for the time being (hopefully until at least November or December).
We also made a trip to Cleveland last week to see Opthomology. The Opthomologist feels that Lexi's eyes turning in is directly related to her brain stem hemorrhage (chiari malformation). He would like to wait until after she has surgery before exploring eye surgery. However, the neurosurgeon does not feel the eye is related and would like to put off brain surgery as long as absolutely possible. So, for now, we are starting to patch her eyes (2 days left eye and one day right eye) to keep her vision from getting any worse. The patching will not help her eyes turn back out but will buy us some time until her next MRI. We will see opthomology again on October 13th.
The most difficult part of this past week is that while this malformation is very upsetting news, we were almost "excited" that we FINALLY had some of the answers we were desperately looking for! The chiari explains a lot of what Lexi has been going through. However, the neurosurgeon does not feel Lexi's current symptoms- no suck/swallow reflex, aspirating on thin liquids, reduced blink, poor muscle control, etc- are not related to newest finding, the chiari malformation, even though these are all symptoms of the malformation. The chiari is a new finding (within the last 1-2 months) and her symptoms were all present before this (right after surgery). So, sweet little Lexi apparently has 2 separate neurological issues- cranial nerve damage, including bi-lateral facial nerve damage, and a chiari malformation. The neurologist is now scheduling into December and January but we hope to get worked in to an appt. after her next MRI.
Prayer Requests:
Please pray for Jon and I as we learn patience with this entire process. We are confused and need a lot of answers that the doctors aren't able to give at this point.
Pray for us as we still struggle to find time to work with Lexi on all her therapy. We are almost settled into the new house (yes- it has taken us this long) but have about 2 more weeks worth of work. Please pray that we are able to get things finished quickly so we can focus more on the help Lexi needs.
Pray for Lexi's neurological issues. We are praying that the doctors find no spinal fluid build-up and that we can post-pone surgery for the time being.
Finally, pray for Jon and I as we continue to seek care for Lexi. We are actually looking into some "alternative therapy" for Lexi. We feel as long as it doesn't hurt her, it is worth trying! Pray for wisdom and we explore several options!
We will post next week with some updates on Lexi's therapy progress!
We also made a trip to Cleveland last week to see Opthomology. The Opthomologist feels that Lexi's eyes turning in is directly related to her brain stem hemorrhage (chiari malformation). He would like to wait until after she has surgery before exploring eye surgery. However, the neurosurgeon does not feel the eye is related and would like to put off brain surgery as long as absolutely possible. So, for now, we are starting to patch her eyes (2 days left eye and one day right eye) to keep her vision from getting any worse. The patching will not help her eyes turn back out but will buy us some time until her next MRI. We will see opthomology again on October 13th.
The most difficult part of this past week is that while this malformation is very upsetting news, we were almost "excited" that we FINALLY had some of the answers we were desperately looking for! The chiari explains a lot of what Lexi has been going through. However, the neurosurgeon does not feel Lexi's current symptoms- no suck/swallow reflex, aspirating on thin liquids, reduced blink, poor muscle control, etc- are not related to newest finding, the chiari malformation, even though these are all symptoms of the malformation. The chiari is a new finding (within the last 1-2 months) and her symptoms were all present before this (right after surgery). So, sweet little Lexi apparently has 2 separate neurological issues- cranial nerve damage, including bi-lateral facial nerve damage, and a chiari malformation. The neurologist is now scheduling into December and January but we hope to get worked in to an appt. after her next MRI.
Prayer Requests:
Please pray for Jon and I as we learn patience with this entire process. We are confused and need a lot of answers that the doctors aren't able to give at this point.
Pray for us as we still struggle to find time to work with Lexi on all her therapy. We are almost settled into the new house (yes- it has taken us this long) but have about 2 more weeks worth of work. Please pray that we are able to get things finished quickly so we can focus more on the help Lexi needs.
Pray for Lexi's neurological issues. We are praying that the doctors find no spinal fluid build-up and that we can post-pone surgery for the time being.
Finally, pray for Jon and I as we continue to seek care for Lexi. We are actually looking into some "alternative therapy" for Lexi. We feel as long as it doesn't hurt her, it is worth trying! Pray for wisdom and we explore several options!
We will post next week with some updates on Lexi's therapy progress!
Thursday, September 3, 2009
Thursday, September 3rd- Not the news we wanted!
We finally heard back from both Doctors today with Lexi's MRI results. We got some good news and some not-so-good news.
First, her MRI went very well! It took them over an hour to get an IV in her poor little veins. They had to poke her 21 times (but fortunately they had already put her to sleep with a gas mask). Her veins are just so tiny and have been poked so many times before. The MRI took about 3 1/2 hours. We were there for 7 hours total but were able to bring Lexi home by early evening! She was a trooper and all the doctors commented on how strong she is! (The cardiac anesthesiologist also took the liberty of doing her hair into a mohawk- she has CRAZY hair!)
The good news: The cardiologist called today and said there were no surprises on the MRI. Lexi still has 2 narrowings in her aorta but nothing they are extremely concerned about at this point. Also, her blood vessels don't appear to be overly narrow. This is very good news!
The bad news: The neurological nurse called and there was definitely a big surprise on her brain MRI. She said this MRI, as compared to the 5 done in November and December of '08 were drastically different. Lexi apparently has a chiari I malformation. Basically, her brain stem is herniated and the bottom of the stem is spilling into her spinal column. Typically, the herniated portion is between 3-5mm. Lexi's is 9mm. They are finding this to be very "unusual" (where have we heard that before?) because there were absolutely no indications of this on her last 5 tests! Why this would come up now is odd.
What's next: Next week after the holiday weekend, the neurologist will be meeting with pediatric neuro-surgeon to discuss the next step. They will probably do another MRI of her spine as one of the biggest issues is that with pressure on the spinal cord from the brain, some experience leaking of spinal fluid. This is, obviously very dangerous and they want to be sure this is not happening. Most likely, since Lexi's herniation is so large and she is displaying many symptoms, they will do brain surgery. This will require them to open her skull at the base of her neck, remove of few of the bone fragments (I don't' remember the medical term) and then mesh the brain stem up. This will give the herniated stem room to "grow." 80% of people who have this surgery recover fully. 20% experience no relief of symptoms. We are simply praying at this point that the doctors have wisdom on what to do. Obviously the thought of our little baby going in for yet another surgery frightens us. But, we will have to do what is best for Lexi.
Please pray:
Pray for little Lexi. If you google her chiari malformation, mostly adults have symptoms and they say it is very painful with extreme headaches, nausea, etc. Little Lexi is not able to express these to us. Pray for any pain she might be in. One of the symptoms is sleep apnea and Lexi has been sleeping very poorly at night and taking very short naps during the day.
Pray for the neurologist and neuro-surgeon who will be making decisions. Pray for wisdom and guidance and that they will be able to explain things very clearly to Jon and I.
Pray for our family. This newest development has been very difficult as we thought we were on the up-swing of Lexi's condition. Pray for peace and for us to find much-needed rest and time to spend with Lexi (and the twins).
Pray for our family and my parents as we head to Pennsylvania this weekend to visit my grandparents. It is a 7 hour trip but my grandparents are in poor health and have yet to meet little Lexi. Pray for safe travel and an up-lifting time with my extended family.
Thank you all for asking us about Lexi. It means a great deal to us (especially in times like this) to know that so many are praying for her healing! If you'd like to leave us comments, you can do so to our e-mail at thehocansons@yahoo.com or on Lexi's facebook "Group Prayers for Alexis Mae Hocanson.
First, her MRI went very well! It took them over an hour to get an IV in her poor little veins. They had to poke her 21 times (but fortunately they had already put her to sleep with a gas mask). Her veins are just so tiny and have been poked so many times before. The MRI took about 3 1/2 hours. We were there for 7 hours total but were able to bring Lexi home by early evening! She was a trooper and all the doctors commented on how strong she is! (The cardiac anesthesiologist also took the liberty of doing her hair into a mohawk- she has CRAZY hair!)
The good news: The cardiologist called today and said there were no surprises on the MRI. Lexi still has 2 narrowings in her aorta but nothing they are extremely concerned about at this point. Also, her blood vessels don't appear to be overly narrow. This is very good news!
The bad news: The neurological nurse called and there was definitely a big surprise on her brain MRI. She said this MRI, as compared to the 5 done in November and December of '08 were drastically different. Lexi apparently has a chiari I malformation. Basically, her brain stem is herniated and the bottom of the stem is spilling into her spinal column. Typically, the herniated portion is between 3-5mm. Lexi's is 9mm. They are finding this to be very "unusual" (where have we heard that before?) because there were absolutely no indications of this on her last 5 tests! Why this would come up now is odd.
What's next: Next week after the holiday weekend, the neurologist will be meeting with pediatric neuro-surgeon to discuss the next step. They will probably do another MRI of her spine as one of the biggest issues is that with pressure on the spinal cord from the brain, some experience leaking of spinal fluid. This is, obviously very dangerous and they want to be sure this is not happening. Most likely, since Lexi's herniation is so large and she is displaying many symptoms, they will do brain surgery. This will require them to open her skull at the base of her neck, remove of few of the bone fragments (I don't' remember the medical term) and then mesh the brain stem up. This will give the herniated stem room to "grow." 80% of people who have this surgery recover fully. 20% experience no relief of symptoms. We are simply praying at this point that the doctors have wisdom on what to do. Obviously the thought of our little baby going in for yet another surgery frightens us. But, we will have to do what is best for Lexi.
Please pray:
Pray for little Lexi. If you google her chiari malformation, mostly adults have symptoms and they say it is very painful with extreme headaches, nausea, etc. Little Lexi is not able to express these to us. Pray for any pain she might be in. One of the symptoms is sleep apnea and Lexi has been sleeping very poorly at night and taking very short naps during the day.
Pray for the neurologist and neuro-surgeon who will be making decisions. Pray for wisdom and guidance and that they will be able to explain things very clearly to Jon and I.
Pray for our family. This newest development has been very difficult as we thought we were on the up-swing of Lexi's condition. Pray for peace and for us to find much-needed rest and time to spend with Lexi (and the twins).
Pray for our family and my parents as we head to Pennsylvania this weekend to visit my grandparents. It is a 7 hour trip but my grandparents are in poor health and have yet to meet little Lexi. Pray for safe travel and an up-lifting time with my extended family.
Thank you all for asking us about Lexi. It means a great deal to us (especially in times like this) to know that so many are praying for her healing! If you'd like to leave us comments, you can do so to our e-mail at thehocansons@yahoo.com or on Lexi's facebook "Group Prayers for Alexis Mae Hocanson.
Monday, August 17, 2009
Monday, August 17th- Trying to be flexible!
The cardiology department called today. They feel it is important that they also do an MRI on Lexi. There is some concern about her blood vessels around her heart being too narrow. This can be very dangerous and even fatal. However, the cardiac MRI is 2 hours, along with the brain MRI, that makes it a 3 hour test. The cardiac anesthesiologist only wants to put Lexi under once. So, after phone calls with cardiology, neurology, and opthomology, the doctors feel it best that we wait and schedule both MRIs for September 1st (the 1st available for such a lengthy test). The time is set for 7am!! (This means another stay in Cleveland- we're going to check into the Ronald McDonald house!). So, we will not have any more news (we hope!) until after the 1st. We knew people would be praying and checking up tomorrow so we wanted to let you all know! With Lexi's 2 aortic narrowings, it is definitely better to be safe then rush into things!
Thank you for your continue prayers! Pray that Lexi's vision is not too affected the next 2 weeks as we wait for the MRI.
Thank you for your continue prayers! Pray that Lexi's vision is not too affected the next 2 weeks as we wait for the MRI.
Wednesday, August 12, 2009
Wednsday, August 12- update on MRI
This will be brief, but we wanted to let everyone know that our wonderful neurologist (and we mean it!) managed to talk the radiologist into double-booking an MRI for Lexi! We see our family doctor on Monday for her physical. We have the Ok from the cardiologist to proceed, so, it looks like we're set for 10am next Tuesday! So, she has a sedated MRI next Tuesday. Typically, MRI's really aren't that big of a deal, but, because of Lexi's age, size and cardiac history, she will be going under full anesthesia and most likely be put on a ventilator again. In addition, they warned us that they may have to admit her following the MRI because of her past history in order to carefully monitor her coming out of anesthesia. She did well on her EMG, so we're hoping just a few hours in recovery will be all she needs and we can avoid another hospital stay- even a short one!
Please pray that Lexi's MRI goes well and that the doctors get a clear picture as to what is happening. Lexi right eye is pretty severe and we are very concerned!
Please also pray that the anesthesia goes well and Lexi is able to come home on the same day!
We'll post again next week after the MRI! They will have the results back in 24 hours after the scan!
Please pray that Lexi's MRI goes well and that the doctors get a clear picture as to what is happening. Lexi right eye is pretty severe and we are very concerned!
Please also pray that the anesthesia goes well and Lexi is able to come home on the same day!
We'll post again next week after the MRI! They will have the results back in 24 hours after the scan!
Monday, August 10, 2009
August 10, 2009- Follow-up from neurology
We saw a neurologist today. We actually saw 2 as the first doctor wanted to get a second opinion as Lexi's "symptoms" are extremely unusual. Our neurologist was on vacation, but it was good to get two new perspectives. The neurologist think that there is an issue with Lexi's brainstem and sending correct responses to her eyes. This would be related to the cranial damage she had following her heart surgery. They "mystery" is why this is just now coming up. That is why there is so much concern. They want to do an MRI as soon as possible. However, the first available isn't until September 1st. The neurologist do not feel this is soon enough so they are going to make some calls tomorrow and work her in. The difficult thing is that Lexi has to be sedated so they have to involve a pediatric anesthesiologist that specializes in cardiac. The neurologist today think that Lexi has some neuron damage on her brainstem from lack of oxygen or blood supply during surgery. Hopefully, this will be shown in the MRI. Otherwise, it's a "guess" and we will go back to Opthomology to look into eye surgery in the next few weeks.
Please pray that we are able to get Lexi worked in sooner for her MRI!! Thank you all for your concern!
Please pray that we are able to get Lexi worked in sooner for her MRI!! Thank you all for your concern!
Sunday, August 9, 2009
Sunday, August 9,2009- Busy week!
We have had a very busy week this past week for Alexis! Let me explain:
Alexis' has been having some issues with her eyes turning inward. We noticed it about 3 weeks ago but thought it may be just a phase. This past week her therapists and my sister, Holly, commented on it. We took her to see the pediatrician at Blanchard Valley Hospital and he said it is definitely of concern. So, off we went for our 2nd trip to Cleveland this past week. On Monday, we went to see GI and ENT. Thursday, we saw Opthomology. The opthomologist are also concerned as to what is causing her eyes to turn in so quickly. In addition, it quickly affects infant's vision as it is still developing. The good news is that it is not her optic nerve (cranial nerve 3), which means there is no immediate danger to Lexi's vision. The opthomologist are pretty sure it is due to her cranial nerve damage- this would be cranial nerve 6. So now, we have been worked into see her neurologist on Monday (tomorrow). The neurologist plan to do a full neurological exam Monday, most likely followed by an MRI sometime this week. If things do not progress in the next 3-4 weeks, they will be scheduling her for eye surgery. Obviously, Lexi does not need any more "strikes" against her. Please pray that the neurological exam goes well on Monday and this is only a very temporary issue from her nerve damage.
Lexi's therapies are going well but her progress remains slow. Her vision troubles are definitely of concern to the therapist as vision drives a lot of physical milestones. We are still working with Lexi on grasping toys with her hands, eating and now are starting to work on her sitting up. The best news is that Lexi is now giving some pretty big smiles on a regular basis (especially for her mommy!) The GI doctor on Monday is still concerned about her size, so they have increased her calories via formula. Lexi gaining weight more quickly will also hopefully help with her physical milestones.
Please pray for traveling as we make our 3rd trip to Cleveland in a week. Lexi usually only lasts about 1 hour in her car seat. Pray that she remains peaceful and patient.
Pray the Lexi's exam goes well tomorrow and that, regardless of the outcome, the doctors can find out exactly what is causing this sudden vision problem.
We will try to post some information later this week after we meet with neurology.
Alexis' has been having some issues with her eyes turning inward. We noticed it about 3 weeks ago but thought it may be just a phase. This past week her therapists and my sister, Holly, commented on it. We took her to see the pediatrician at Blanchard Valley Hospital and he said it is definitely of concern. So, off we went for our 2nd trip to Cleveland this past week. On Monday, we went to see GI and ENT. Thursday, we saw Opthomology. The opthomologist are also concerned as to what is causing her eyes to turn in so quickly. In addition, it quickly affects infant's vision as it is still developing. The good news is that it is not her optic nerve (cranial nerve 3), which means there is no immediate danger to Lexi's vision. The opthomologist are pretty sure it is due to her cranial nerve damage- this would be cranial nerve 6. So now, we have been worked into see her neurologist on Monday (tomorrow). The neurologist plan to do a full neurological exam Monday, most likely followed by an MRI sometime this week. If things do not progress in the next 3-4 weeks, they will be scheduling her for eye surgery. Obviously, Lexi does not need any more "strikes" against her. Please pray that the neurological exam goes well on Monday and this is only a very temporary issue from her nerve damage.
Lexi's therapies are going well but her progress remains slow. Her vision troubles are definitely of concern to the therapist as vision drives a lot of physical milestones. We are still working with Lexi on grasping toys with her hands, eating and now are starting to work on her sitting up. The best news is that Lexi is now giving some pretty big smiles on a regular basis (especially for her mommy!) The GI doctor on Monday is still concerned about her size, so they have increased her calories via formula. Lexi gaining weight more quickly will also hopefully help with her physical milestones.
Please pray for traveling as we make our 3rd trip to Cleveland in a week. Lexi usually only lasts about 1 hour in her car seat. Pray that she remains peaceful and patient.
Pray the Lexi's exam goes well tomorrow and that, regardless of the outcome, the doctors can find out exactly what is causing this sudden vision problem.
We will try to post some information later this week after we meet with neurology.
Sunday, July 5, 2009
Sunday, July 5th
Happy 4th (a day late!). We have had a very stressful week, but I wanted to blog ASAP about Lexi's EMG results.
Lexi's test went well last Monday. The entire procedure took about 3 hours from the time they did the prep until she was out of recovery. In total, they stuck 18 needles in her face but were not able to test her tongue this time. The neurologist called on Wednesday with the results. The good news is that Lexi does not show any signs of regression- meaning she's not losing any facial nerve function. The results are measured in terms of waves. Lexi's waves are bigger, showing more signs of regeneration (this is great news- definitely the right direction!). However, there are not as many waves as their were in January (meaning the regeneration seems to be slowing down some- not such good news). At "best guess," the neurologist thinks it could be another 12-18 months for Lexi's facial nerve damage to "heal," if she ever does regain full control. her forehead looks good but her right side of her face is still considered severe and the left side is moderately severe. Finally, the neurologist thinks that since there is some healing with Lexi's facial nerves and her swallowing does not seem to be improving as well, he feels there may be some additional damage with Lexi's throat/swallowing mechanisms. He has recommended that we take more evasive action with ENT and GI and do some additional procedures to find out exactly what is happening with her swallowing. So, to some up, we got some good news, but not as great as we were hoping for:-)
From a cardiology standpoint, the new cardiologist we saw in Cleveland does not feel anything needs to be done immediately with Lexi's heart (thank the Lord!). They are more concerned now with her SVAS (Supra-valvular aortic stenosis), which is a new narrowing found right above her aortic valve. They are also watching the blood vessels around her heart as the left side is narrowed. If blood vessels on both sides of the heart are too narrow, this can become fatal. The cardiologists would like to schedule an MRI for Lexi in the fall to be certain everything looks ok.
On a side note- our family is finally settling in to our new home and we are excited about the extra room for Lexi and the twins. It has been very difficult to unpack with 3 little ones running around. We are anxious to get Lexi back into her nursing and therapy routine. Lexi's feeding tube got pulled out this weekend (which completely frightened me!). Thank God for our nurse that came over at 5pm on July 4th! He was able to put a new tube in Lexi and avoid a trip to the ER.
Prayer Requests:
Please pray for Lexi's facial nerve damage. Pray that we are able to see drastic improvement the next few months. Pray for wisdom for the neurologist and all doctors involved in her care. We will be seeing 3 doctors in August (endocrinology, ENT and GI) and 4 in October (neurology, cardiology, Opthomology and a feeding specialist).
Pray for Lexi's heart. Pray that the doctor's do not find narrowing in her blood vessels.
Pray for our family as we work on getting established in our new home.
Thank you again for your continued prayers. Lexi is getting so big- we will post some new pictures on the blog soon!
Lexi's test went well last Monday. The entire procedure took about 3 hours from the time they did the prep until she was out of recovery. In total, they stuck 18 needles in her face but were not able to test her tongue this time. The neurologist called on Wednesday with the results. The good news is that Lexi does not show any signs of regression- meaning she's not losing any facial nerve function. The results are measured in terms of waves. Lexi's waves are bigger, showing more signs of regeneration (this is great news- definitely the right direction!). However, there are not as many waves as their were in January (meaning the regeneration seems to be slowing down some- not such good news). At "best guess," the neurologist thinks it could be another 12-18 months for Lexi's facial nerve damage to "heal," if she ever does regain full control. her forehead looks good but her right side of her face is still considered severe and the left side is moderately severe. Finally, the neurologist thinks that since there is some healing with Lexi's facial nerves and her swallowing does not seem to be improving as well, he feels there may be some additional damage with Lexi's throat/swallowing mechanisms. He has recommended that we take more evasive action with ENT and GI and do some additional procedures to find out exactly what is happening with her swallowing. So, to some up, we got some good news, but not as great as we were hoping for:-)
From a cardiology standpoint, the new cardiologist we saw in Cleveland does not feel anything needs to be done immediately with Lexi's heart (thank the Lord!). They are more concerned now with her SVAS (Supra-valvular aortic stenosis), which is a new narrowing found right above her aortic valve. They are also watching the blood vessels around her heart as the left side is narrowed. If blood vessels on both sides of the heart are too narrow, this can become fatal. The cardiologists would like to schedule an MRI for Lexi in the fall to be certain everything looks ok.
On a side note- our family is finally settling in to our new home and we are excited about the extra room for Lexi and the twins. It has been very difficult to unpack with 3 little ones running around. We are anxious to get Lexi back into her nursing and therapy routine. Lexi's feeding tube got pulled out this weekend (which completely frightened me!). Thank God for our nurse that came over at 5pm on July 4th! He was able to put a new tube in Lexi and avoid a trip to the ER.
Prayer Requests:
Please pray for Lexi's facial nerve damage. Pray that we are able to see drastic improvement the next few months. Pray for wisdom for the neurologist and all doctors involved in her care. We will be seeing 3 doctors in August (endocrinology, ENT and GI) and 4 in October (neurology, cardiology, Opthomology and a feeding specialist).
Pray for Lexi's heart. Pray that the doctor's do not find narrowing in her blood vessels.
Pray for our family as we work on getting established in our new home.
Thank you again for your continued prayers. Lexi is getting so big- we will post some new pictures on the blog soon!
Sunday, June 21, 2009
Sunday, June 21st
I'm always thankful for running into people we haven't seen in a while. They ask details about Lexi and I wonder how they know so much- to which they reply- I've been reading the blog! Life has been...overwhelming for our family to say the least but we will try to do better at keeping the blog updated at least every other week as Lexi still needs a great deal of prayer and healing!
For Lexi's update:
We have been making some progress with physical therapy and occupational therapy. Lexi is now holding her head up but still tilts it to the right due to her torticollis. It has been difficult to find time to work with her multiple times a day with trying to move! However, her speech therapy has been moving very slowly. Lexi is now taking some bites of baby food by mouth, which we are very thankful for! She it taking about 15 bites. We are still having no luck with bottle feeding. We have been referred to the Cleveland Clinic feeding hospital, but the first opening is not until October. Also, if they decide to take her into the program, they will want to see her in Cleveland once a week! We are hoping to make drastic improvements in her feeding over the next few months so we can avoid this!
In regards to equipment, we were blessed with an anonymous donor from our church that will now allow us to cover the portion of Lexi's physical therapy equipment that our insurance will not cover. The company for the equipment came out 2 weeks ago and is working on getting everything ordered! This is going to be a huge help for Lexi!
Finally, we are heading to Cleveland Clinic next Sunday evening as we have a 9am apt. on Monday morning. Lexi will be seeing Cardiology and Neurology next Monday- probably the 2 most important doctors for her care! The neurologist has also scheduled an EMG to determine Lexi's progress. For the EMG, they place tiny needles in her face, throat and tongue and send electrical currents through them to determine the extent of her nerve damage. In January, they did not use sedation on her as this is dangerous to do with infants. However, they have decided to do part of the test under sedation this time since Lexi is now rolling all over the place! As you can imagine, you must lay completely still during the test! We go in on Wednesday for pre-surgery exams. The EMG will last 2-3 hours and we will have the results on Tuesday of next week.
Prayer Requests:
Please pray for Lexi's therapies. Pray the the therapists have wisdom on how to help Lexi improve. Pray that we see quick improvements with feeding.
Pray for our family as we are struggling to find time for everything. Completely re-modeling this foreclosure has been very tasking. The basement also flooded this past weekend and we are struggling to find the cause of the flooding problem! Pray for strength and time management as we work to move this week (we hope)!!
Finally, please be in pray for Lexi's EMG next week. An EMG was completed in January and this will be the exact same test this time, with the exception of anesthesia. This is HUGE for us to give us answers as to Lexi's future. If there are improvements, this means Lexi will most likely improve. If there are no improvements in the past 6 months, Lexi will most likely not get better! Please pray for a smooth test and positive results!
We will blog more when we get the results next Tuesday. Her EMG is from 12:30pm-3:00pm on Monday, June 29th. Please be in prayer for little pain for little Lexi during this time!
For Lexi's update:
We have been making some progress with physical therapy and occupational therapy. Lexi is now holding her head up but still tilts it to the right due to her torticollis. It has been difficult to find time to work with her multiple times a day with trying to move! However, her speech therapy has been moving very slowly. Lexi is now taking some bites of baby food by mouth, which we are very thankful for! She it taking about 15 bites. We are still having no luck with bottle feeding. We have been referred to the Cleveland Clinic feeding hospital, but the first opening is not until October. Also, if they decide to take her into the program, they will want to see her in Cleveland once a week! We are hoping to make drastic improvements in her feeding over the next few months so we can avoid this!
In regards to equipment, we were blessed with an anonymous donor from our church that will now allow us to cover the portion of Lexi's physical therapy equipment that our insurance will not cover. The company for the equipment came out 2 weeks ago and is working on getting everything ordered! This is going to be a huge help for Lexi!
Finally, we are heading to Cleveland Clinic next Sunday evening as we have a 9am apt. on Monday morning. Lexi will be seeing Cardiology and Neurology next Monday- probably the 2 most important doctors for her care! The neurologist has also scheduled an EMG to determine Lexi's progress. For the EMG, they place tiny needles in her face, throat and tongue and send electrical currents through them to determine the extent of her nerve damage. In January, they did not use sedation on her as this is dangerous to do with infants. However, they have decided to do part of the test under sedation this time since Lexi is now rolling all over the place! As you can imagine, you must lay completely still during the test! We go in on Wednesday for pre-surgery exams. The EMG will last 2-3 hours and we will have the results on Tuesday of next week.
Prayer Requests:
Please pray for Lexi's therapies. Pray the the therapists have wisdom on how to help Lexi improve. Pray that we see quick improvements with feeding.
Pray for our family as we are struggling to find time for everything. Completely re-modeling this foreclosure has been very tasking. The basement also flooded this past weekend and we are struggling to find the cause of the flooding problem! Pray for strength and time management as we work to move this week (we hope)!!
Finally, please be in pray for Lexi's EMG next week. An EMG was completed in January and this will be the exact same test this time, with the exception of anesthesia. This is HUGE for us to give us answers as to Lexi's future. If there are improvements, this means Lexi will most likely improve. If there are no improvements in the past 6 months, Lexi will most likely not get better! Please pray for a smooth test and positive results!
We will blog more when we get the results next Tuesday. Her EMG is from 12:30pm-3:00pm on Monday, June 29th. Please be in prayer for little pain for little Lexi during this time!
Thursday, May 21, 2009
Thursday, May 21
Wow! I can't believe almost an entire month has gone by since we have blogged! It has been a very busy month for our entire family!
Lexi is making some progress. Not nearly as quick as we would like, but still some progress. My dad and I spent most of the day in Cleveland again today at Doctor's apts. In the past month, Lexi has been improving on holding her head up, but she still has some work to do. Her torticollis has made some improvements as well. We do daily exercises and stretches with her to help her as much as we can. The torticollis is the main reason she isn't able to hold her head up well. She is doing a great job, however, at rolling over! She rolls from her stomach to her back all the time and is almost rolling from her back to her tummy!
Mother's day weekend, I actually spent 2 different days in the ER with Lexi. On Friday, May 15th, she was in the ER for an infected G-tube. Findlay did not have the right size tube to replace it, however, so we had to wait until today to see the GI doctor in Cleveland. Then, on Sunday, Lexi got a little stomach bug and threw up many times. She has a hard time catching her breath when she throws up. She was acting very strange that evening, so, back to the ER we went! I'm glad we went though! Lexi aspirated on some of her vomit and was developing pneumonia! They were able to give her a heavy dose of antibiotics and after a trip to the Pediatrician on Monday and 3 nursing visits this week, she is doing much better!
All 3 of her apts. today were follow-ups. The doctors are keeping a close eye on her aspiration, thyroid levels and GI issues. We will have a BIG day on June 29th as we will see a new cardiologist at Cleveland Clinic, Neurology and Lexi will get another EMG- the test that sticks needles in her face, tongue and neck to determine the amount of facial nerve damage. This is going to be able to give us a great deal of information as to whether or not Lexi is improving and healing!!
Lexi is also finally starting to find her voice! She is making a few "oo" sounds from time to time and this is very exciting. Please continue to pray for her as we work on this slow recovery. We are taking Lexi on Children of the Light tour from June 2-7. Pray that we are able to find time to work on her therapies and that she does well with so many different environments!
Finally, the most exciting news is that we have been led to a new home!! We found a foreclosure in our neighborhood that is much bigger AND has an extra bedroom and bathroom. The house has a small front room that we plan to use for all of Lexi's therapy equipment (that we are STILL working on getting through insurance!!) We will be able to get this larger home AND have lower monthly payments! Praise God! We also sold our current home in TWO days!! (my mom is an awesome realtor!!) However, the new house needs quite a bit of work- especially a new roof. So, if anyone just LOVES to spend time working on a roof, we will be taking off the shingles and putting new ones on next weekend, May 29,30 and 31st before we head off on tour for a week:-) Shoot us an e-mail if you'd like to help out even for a few hours!
Prayer Requests:
Please continue to pray for Lexi's feedings. She is working on some spoon feedings and takes between 15-25 bites. However, she has no interest in bottles or pacifiers. Pray that we see major improvements in the next month before her EMG.
Pray for Lexi's G-tube. Her tube is bothersome to her and currently is infected. Pray that her feedings start making HUGE strides so this G-tube is not a permanent thing!!
Pray for Jon and I as we struggle to find time to work with Lexi and pack AND fix up a new house. This is a major undertaking but we really feel it is meant to be! Please pray for patience AND endurance!
Happy Memorial Day!
Lexi is making some progress. Not nearly as quick as we would like, but still some progress. My dad and I spent most of the day in Cleveland again today at Doctor's apts. In the past month, Lexi has been improving on holding her head up, but she still has some work to do. Her torticollis has made some improvements as well. We do daily exercises and stretches with her to help her as much as we can. The torticollis is the main reason she isn't able to hold her head up well. She is doing a great job, however, at rolling over! She rolls from her stomach to her back all the time and is almost rolling from her back to her tummy!
Mother's day weekend, I actually spent 2 different days in the ER with Lexi. On Friday, May 15th, she was in the ER for an infected G-tube. Findlay did not have the right size tube to replace it, however, so we had to wait until today to see the GI doctor in Cleveland. Then, on Sunday, Lexi got a little stomach bug and threw up many times. She has a hard time catching her breath when she throws up. She was acting very strange that evening, so, back to the ER we went! I'm glad we went though! Lexi aspirated on some of her vomit and was developing pneumonia! They were able to give her a heavy dose of antibiotics and after a trip to the Pediatrician on Monday and 3 nursing visits this week, she is doing much better!
All 3 of her apts. today were follow-ups. The doctors are keeping a close eye on her aspiration, thyroid levels and GI issues. We will have a BIG day on June 29th as we will see a new cardiologist at Cleveland Clinic, Neurology and Lexi will get another EMG- the test that sticks needles in her face, tongue and neck to determine the amount of facial nerve damage. This is going to be able to give us a great deal of information as to whether or not Lexi is improving and healing!!
Lexi is also finally starting to find her voice! She is making a few "oo" sounds from time to time and this is very exciting. Please continue to pray for her as we work on this slow recovery. We are taking Lexi on Children of the Light tour from June 2-7. Pray that we are able to find time to work on her therapies and that she does well with so many different environments!
Finally, the most exciting news is that we have been led to a new home!! We found a foreclosure in our neighborhood that is much bigger AND has an extra bedroom and bathroom. The house has a small front room that we plan to use for all of Lexi's therapy equipment (that we are STILL working on getting through insurance!!) We will be able to get this larger home AND have lower monthly payments! Praise God! We also sold our current home in TWO days!! (my mom is an awesome realtor!!) However, the new house needs quite a bit of work- especially a new roof. So, if anyone just LOVES to spend time working on a roof, we will be taking off the shingles and putting new ones on next weekend, May 29,30 and 31st before we head off on tour for a week:-) Shoot us an e-mail if you'd like to help out even for a few hours!
Prayer Requests:
Please continue to pray for Lexi's feedings. She is working on some spoon feedings and takes between 15-25 bites. However, she has no interest in bottles or pacifiers. Pray that we see major improvements in the next month before her EMG.
Pray for Lexi's G-tube. Her tube is bothersome to her and currently is infected. Pray that her feedings start making HUGE strides so this G-tube is not a permanent thing!!
Pray for Jon and I as we struggle to find time to work with Lexi and pack AND fix up a new house. This is a major undertaking but we really feel it is meant to be! Please pray for patience AND endurance!
Happy Memorial Day!
Friday, April 24, 2009
Friday, April 24
I apologize that it has been so many days since we last blogged. Things have been extremely busy for us the past 2 weeks. But, I know many of you have been asking how Lexi's swallow study went last week and appreciate all the prayers and questions!
We went to Cleveland for Lexi's swallow study on April 15th. Cleveland, once again, did a fantastic job. They actually let me feed her during the study since I am most familiar with Lexi and what she prefers. Unfortunately, Lexi aspirated 2 of 25 times on thin liquids. While infants aspirating isn't all that uncommon, Lexi did 2 silent aspirations, which means she did not cough or show any signs of distress. She doesn't feel the liquid going into her lungs. This is obviously very dangerous and discouraging. HOWEVER, Cleveland did a very thorough job. They then allowed me to give her nectar-thick formula via bottle and she did great! We then went to applesauce and then back to necart-thick formula. Lexi didn't aspirate on any of these! Over all, she did 50 swallows of nectar-thick and passed! Yeah! This means we will be able to resume oral feeds with some thicker substances. There is actually a gel pack out there that you add to formula and it makes it just the right consistency. We will begin this process next week with the speech therapist.
We were also able to see GI last week again and Lexi seems to be doing well on her new medication. The doctor also changed out her mic-key to a shorter one. We will be going back to Cleveland in 3-4 weeks.
Lexi had a cardiology appointment today with a doctor from Toledo and everything looks pretty good! She will have an echo-cardiogram again next week which will give us a lot more information as to how her 2 narrowings are doing.
Finally, Lexi has been working very hard on her therapies. She is developing torticollis, which is a tightening of the neck muscles. Lexi keeps her head tilted to the right (almost as if always touching her right ear to her right shoulder). We didn't think a tight neck was too big of a deal, but the Physical therapist said that, if not corrected, it can actually cause facial deformities in infants. Having more weight on one side of the head due to the tilt causes infant's heads to become mis-shaped and eventually, deformed. So, needless to say, we are hitting Physical therapy very hard as Lexi has enough strikes against her! We are working with insurance to purchase 2 different therapy forms for our house- a wedge for her to sleep on at night to help with reflux and a chair to help her sit more upright during feeds. Unforunately, insurance companies make everything very lengthy and drawn out! A simple request takes tons of papers and weeks to get approved!
Prayer requests:
Pray for Lexi as she begins to work on feeding again. Pray that we have much success this next week!
Pray for Lexi's Physical therapy sessions and that this torticollis will get fixed very soon!
Pray for me as I work with the insurance companies to get her feeding gel and both therapy forms covered so we do not have to pay for them out of pocket. (The wedge is $400 and the chair set is almost $1000!)
We hope you are all enjoying the spring weather! Thank you for your continued help and support!
We went to Cleveland for Lexi's swallow study on April 15th. Cleveland, once again, did a fantastic job. They actually let me feed her during the study since I am most familiar with Lexi and what she prefers. Unfortunately, Lexi aspirated 2 of 25 times on thin liquids. While infants aspirating isn't all that uncommon, Lexi did 2 silent aspirations, which means she did not cough or show any signs of distress. She doesn't feel the liquid going into her lungs. This is obviously very dangerous and discouraging. HOWEVER, Cleveland did a very thorough job. They then allowed me to give her nectar-thick formula via bottle and she did great! We then went to applesauce and then back to necart-thick formula. Lexi didn't aspirate on any of these! Over all, she did 50 swallows of nectar-thick and passed! Yeah! This means we will be able to resume oral feeds with some thicker substances. There is actually a gel pack out there that you add to formula and it makes it just the right consistency. We will begin this process next week with the speech therapist.
We were also able to see GI last week again and Lexi seems to be doing well on her new medication. The doctor also changed out her mic-key to a shorter one. We will be going back to Cleveland in 3-4 weeks.
Lexi had a cardiology appointment today with a doctor from Toledo and everything looks pretty good! She will have an echo-cardiogram again next week which will give us a lot more information as to how her 2 narrowings are doing.
Finally, Lexi has been working very hard on her therapies. She is developing torticollis, which is a tightening of the neck muscles. Lexi keeps her head tilted to the right (almost as if always touching her right ear to her right shoulder). We didn't think a tight neck was too big of a deal, but the Physical therapist said that, if not corrected, it can actually cause facial deformities in infants. Having more weight on one side of the head due to the tilt causes infant's heads to become mis-shaped and eventually, deformed. So, needless to say, we are hitting Physical therapy very hard as Lexi has enough strikes against her! We are working with insurance to purchase 2 different therapy forms for our house- a wedge for her to sleep on at night to help with reflux and a chair to help her sit more upright during feeds. Unforunately, insurance companies make everything very lengthy and drawn out! A simple request takes tons of papers and weeks to get approved!
Prayer requests:
Pray for Lexi as she begins to work on feeding again. Pray that we have much success this next week!
Pray for Lexi's Physical therapy sessions and that this torticollis will get fixed very soon!
Pray for me as I work with the insurance companies to get her feeding gel and both therapy forms covered so we do not have to pay for them out of pocket. (The wedge is $400 and the chair set is almost $1000!)
We hope you are all enjoying the spring weather! Thank you for your continued help and support!
Saturday, April 11, 2009
Saturday, April 11
Happy Easter! We are so excited to celebrate this joyous holiday with our three little ones at home! Lexi got her picture with the Easter bunny today and was able to watch the twins go on their first Easter egg hunt. Many of you have asked how her appointments at Cleveland Clinic went on Wednesday so I wanted to be sure and update everyone!
Wednesday was a very long, but productive day. We were able to see 4 new doctors and get blood work done all in 1 day! We left the house at 6:30am and returned at 8:30pm. We saw G.I. (gastroenterology) first. The doctor was very knowledgeable and gave us some helpful information. She scheduled Lexi for a new swallow study next Wednesday. Cleveland would like their own study done and we are very excited! We are asking everyone to PLEASE pray that Lexi does not aspirate on her next swallow study! The GI doctor also said that Lexi's mic-key tube is too large for her little tummy. This could be part of the reason for her crying and discomfort during her feeds. At her next appointment immediately after her swallow study, the doctor will most likely replace her tube with a smaller one. She also said there is absolutely no reason we should be paying $200 a month (not covered by any insurance) for Lexi's reflux medication. She gave us a script for a new medicine that will only cost $45 a month!
After GI and lunch, we then saw Endocrinology. Lexi has an under active thyroid. We weren't very concerned about this, but the doctor said it can actually lead to poor brain development. An under active thyroid in kids under age 3 is actually a very big deal. We're so glad we got her appointment moved up from July! The doctor did some blood work and put her on some thyroid medication (yeah-one more!)
After Endocrinology, it was on to Opthomology. Instead of a 3 hour appointment, we were only there for about an hour and were able to see 3 eye doctors during that time! They gave Lexi a very thorough check and said her vision looks good. We need to continue her eye drops but they do not need to see her back for 6 months!
Our last appointment was with ENT (ear, nose and throat). The doctor talked with us for quite some time. They are a little concerned about Lexi's raspy voice and the amount of time she spent on the ventilator. So, they put a tiny camera down Lexi's nose and into her throat. We were able to look at her vocal cords on a monitor! Lexi might have a nodule on her vocal cords and they look very red and swollen. This could be due to her reflux. However, at this point, there is nothing they will do for the nodule as operating on vocal cords is very risky. They will see Lexi back in 1 month.
Overall, we had a very productive day and Lexi did a fantastic job with all the poking and prodding! Are biggest prayer request at this point is for her swallow study at 9am next Wednesday, April 15th. PLEASE pray that Lexi does not aspirate during this study. If she does well with the test, we will be able to actively pursue bottle feeds again!
We will hopefully post again next week to update you all on her swallow study! Until then, have a blessed Easter! He is Risen!
Wednesday was a very long, but productive day. We were able to see 4 new doctors and get blood work done all in 1 day! We left the house at 6:30am and returned at 8:30pm. We saw G.I. (gastroenterology) first. The doctor was very knowledgeable and gave us some helpful information. She scheduled Lexi for a new swallow study next Wednesday. Cleveland would like their own study done and we are very excited! We are asking everyone to PLEASE pray that Lexi does not aspirate on her next swallow study! The GI doctor also said that Lexi's mic-key tube is too large for her little tummy. This could be part of the reason for her crying and discomfort during her feeds. At her next appointment immediately after her swallow study, the doctor will most likely replace her tube with a smaller one. She also said there is absolutely no reason we should be paying $200 a month (not covered by any insurance) for Lexi's reflux medication. She gave us a script for a new medicine that will only cost $45 a month!
After GI and lunch, we then saw Endocrinology. Lexi has an under active thyroid. We weren't very concerned about this, but the doctor said it can actually lead to poor brain development. An under active thyroid in kids under age 3 is actually a very big deal. We're so glad we got her appointment moved up from July! The doctor did some blood work and put her on some thyroid medication (yeah-one more!)
After Endocrinology, it was on to Opthomology. Instead of a 3 hour appointment, we were only there for about an hour and were able to see 3 eye doctors during that time! They gave Lexi a very thorough check and said her vision looks good. We need to continue her eye drops but they do not need to see her back for 6 months!
Our last appointment was with ENT (ear, nose and throat). The doctor talked with us for quite some time. They are a little concerned about Lexi's raspy voice and the amount of time she spent on the ventilator. So, they put a tiny camera down Lexi's nose and into her throat. We were able to look at her vocal cords on a monitor! Lexi might have a nodule on her vocal cords and they look very red and swollen. This could be due to her reflux. However, at this point, there is nothing they will do for the nodule as operating on vocal cords is very risky. They will see Lexi back in 1 month.
Overall, we had a very productive day and Lexi did a fantastic job with all the poking and prodding! Are biggest prayer request at this point is for her swallow study at 9am next Wednesday, April 15th. PLEASE pray that Lexi does not aspirate during this study. If she does well with the test, we will be able to actively pursue bottle feeds again!
We will hopefully post again next week to update you all on her swallow study! Until then, have a blessed Easter! He is Risen!
Saturday, April 4, 2009
Saturday, April 4th
Here is our update on Lexi for the first week of April:
We have had a slow week with Alexis. It seems that we have reached a plateau with her and her therapies. This is to be expected with anyone in therapy, but it is difficult to be patient and see such slow progress. The physical therapist wasn't able to come this week, but Lexi is still not able to hold her head up all the time. We are working with her as often as we can, but the weeks spent in the hospital have put her very behind- holding her head up, however, is the basis of additional milestones- sitting up, pushing up, crawling etc.
The speech therapist was able to look at her swallow study. The good news is that she was not able to see any aspiration, which means it is a micro-aspiration and was very small. However, Lexi is unfortunately doing silent aspiration, which means she is not showing us any signs of distress when she aspirates. The therapists are very reluctant to allow Lexi to take anything by mouth because of this. Again, this is very frustrating! While we have been assured that Lexi not being able to eat by mouth is not permanent, it is the one way we are able to really measure her progress.
Lexi is doing a little better with her new mic-key button but still cries during her feeds. On Tuesday of this week, her pump stopped working so I was very panicked! Thankfully, the health company was able to send a company down from Toledo to deliver us new pump and the NICU doctors at BVH were helpful in talking me through a syringe feed. We saw the Neonatologist on Thursday for Lexi's 5 month check-up and she is a whopping 12lbs 8 oz and 24 inches long! She is in the 5% range though so we'll take it!
Finally, we are going to see 4 doctors next Wednesday at Cleveland Clinic. We have been extremely happy with every aspect of the hospital! The endocrinologist was not available until July, but he agreed to add Lexi to his case load this Wednesday! So, we will begin with GI at 9am, followed by Endocrinology, Opthomology and finally ENT (ear, nose and throat) at 3:30pm. Lexi has some issues with her esophagus and also has a very raspy voice. The speech therapist is concerned she may have nodes on her vocal chords or there may have been some damage from being on the ventilator. We are VERY excited to see all these new doctors and get a new perspective on Lexi's care. We are also thankful that the scheduling department was able to get all 4 appointments on the same day.
Prayer requests:
Please pray for Lexi's therapies. Pray that she makes huge strides in the next few weeks so we can be encouraged! Pray that Jon and I find time to work with Lexi as often as possible!
Pray for Lexi's swallowing. She has pooling in her throat in 2 different spots and this is concerning. Pray the ENT or GI doctors are able to give her some help with swallowing!
Pray for Lexi's appointments on Wednesday. It is going to be a very long day, especially for Lexi, as we will leave at 6:30am and return around 7-8pm that evening. Pray for traveling for me, my dad and Lexi and patience for little Lexi as she will be poked and prodded a lot!
Finally, we have taken several new pictures of Lexi the past few months so I hope to get them posted sometime next week! I'll post it when we do!
We have had a slow week with Alexis. It seems that we have reached a plateau with her and her therapies. This is to be expected with anyone in therapy, but it is difficult to be patient and see such slow progress. The physical therapist wasn't able to come this week, but Lexi is still not able to hold her head up all the time. We are working with her as often as we can, but the weeks spent in the hospital have put her very behind- holding her head up, however, is the basis of additional milestones- sitting up, pushing up, crawling etc.
The speech therapist was able to look at her swallow study. The good news is that she was not able to see any aspiration, which means it is a micro-aspiration and was very small. However, Lexi is unfortunately doing silent aspiration, which means she is not showing us any signs of distress when she aspirates. The therapists are very reluctant to allow Lexi to take anything by mouth because of this. Again, this is very frustrating! While we have been assured that Lexi not being able to eat by mouth is not permanent, it is the one way we are able to really measure her progress.
Lexi is doing a little better with her new mic-key button but still cries during her feeds. On Tuesday of this week, her pump stopped working so I was very panicked! Thankfully, the health company was able to send a company down from Toledo to deliver us new pump and the NICU doctors at BVH were helpful in talking me through a syringe feed. We saw the Neonatologist on Thursday for Lexi's 5 month check-up and she is a whopping 12lbs 8 oz and 24 inches long! She is in the 5% range though so we'll take it!
Finally, we are going to see 4 doctors next Wednesday at Cleveland Clinic. We have been extremely happy with every aspect of the hospital! The endocrinologist was not available until July, but he agreed to add Lexi to his case load this Wednesday! So, we will begin with GI at 9am, followed by Endocrinology, Opthomology and finally ENT (ear, nose and throat) at 3:30pm. Lexi has some issues with her esophagus and also has a very raspy voice. The speech therapist is concerned she may have nodes on her vocal chords or there may have been some damage from being on the ventilator. We are VERY excited to see all these new doctors and get a new perspective on Lexi's care. We are also thankful that the scheduling department was able to get all 4 appointments on the same day.
Prayer requests:
Please pray for Lexi's therapies. Pray that she makes huge strides in the next few weeks so we can be encouraged! Pray that Jon and I find time to work with Lexi as often as possible!
Pray for Lexi's swallowing. She has pooling in her throat in 2 different spots and this is concerning. Pray the ENT or GI doctors are able to give her some help with swallowing!
Pray for Lexi's appointments on Wednesday. It is going to be a very long day, especially for Lexi, as we will leave at 6:30am and return around 7-8pm that evening. Pray for traveling for me, my dad and Lexi and patience for little Lexi as she will be poked and prodded a lot!
Finally, we have taken several new pictures of Lexi the past few months so I hope to get them posted sometime next week! I'll post it when we do!
Thursday, March 26, 2009
Thursday, March 26th
Lexi had her G-tube procedure today. We arrived at Nationwide around 10:30. The nurses put numbing cream on her tube site for an hour, hooked her up to monitors and then gave her sedation medication. The doctor then did her mic-key procedure. They replaced her long PEG tube with a shorter tube. Lexi did well and only had some minor bleeding from the procedure. We had to learn how take care of the new tube and how to replace it as-needed, or every 3 months. We're not sure we are comfortable removing the tube and inserting a new one into her stomach! We are hoping we can either have our home-health nurse or a doctor do this! After a trip to X-ray to check the placement of the tube, Lexi was able to go home (around 2:30pm). She is extremely fussy tonight and her tube site is very red and irritated. We are hoping to have her back to "normal" in a few days.
We have all of Lexi's doctors moved over to Cleveland Clinic except 2- endocrinology and cardiology. The pediatric endocrinologist isn't available in Cleveland until July. We are also trying to find a cardiologist that is best for Lexi.
Lexi's therapies are going well. Her swallow study shows that she is silently aspirating, which means she is showing no signs when liquid enters her lungs. This is obviously very discouraging and dangerous for Lexi so we are not giving her any more liquids by mouth. We are, however, trying some cereal and Lexi is taking 10-15 bites. She is also starting to grab for toys, which is very encouraging!
Please pray for:
Lexi as she recovers from her procedure and for Jon and I as we adjust to the new tubes and caring for it.
Easy transitions to Cleveland as our 1st 2 appointments are there on April 8th.
Lexi's feeds. Pray that she begins to develop some coordination with her tongue.
It's hard to believe that the twins turned 18 months today and Lexi will be 5 months on Saturday! She just hit 12 pounds but she is growing!
We have all of Lexi's doctors moved over to Cleveland Clinic except 2- endocrinology and cardiology. The pediatric endocrinologist isn't available in Cleveland until July. We are also trying to find a cardiologist that is best for Lexi.
Lexi's therapies are going well. Her swallow study shows that she is silently aspirating, which means she is showing no signs when liquid enters her lungs. This is obviously very discouraging and dangerous for Lexi so we are not giving her any more liquids by mouth. We are, however, trying some cereal and Lexi is taking 10-15 bites. She is also starting to grab for toys, which is very encouraging!
Please pray for:
Lexi as she recovers from her procedure and for Jon and I as we adjust to the new tubes and caring for it.
Easy transitions to Cleveland as our 1st 2 appointments are there on April 8th.
Lexi's feeds. Pray that she begins to develop some coordination with her tongue.
It's hard to believe that the twins turned 18 months today and Lexi will be 5 months on Saturday! She just hit 12 pounds but she is growing!
Tuesday, March 17, 2009
Tuesday, March 17th
Happy St. Patrick's Day! I was just at a Mother's of Multiples meeting and was slightly scolded (and reminded) that I have not updated the blog. We do appreciate those of you that check this regularly as we still have a long, up-hill road to climb with Lexi.
We went down to Nationwide on Friday for Lexi's swallow study. We were anxious to find out how she is doing as we have seen some major improvements in her feeds! The swallow study did not go as we had planned. Lexi started off very well, but about 6-7 minutes into the study, she aspirated. This means she swallowed liquid into her lungs instead of down her esophagus. The danger in this is that developing fluid on the lungs can lead to pneumonia. We were extremely disappointed as we were not anticipating this! We have been instructed to stop all bottle feeds with her. They did try honey-thick cereal by a spoon and she seemed to manage this ok. So, we will most likely begin giving her a very small amount of cereal for "therapeutic feeds." We are hoping to do another swallow study in the near future and are praying that for some reason this aspiration was a fluke. It is very frustrating to see Lexi make so much progress (she was up to amost an ounce!) and then to have it taken away.
We also had a visit with the opthomologist (after a 3 hour wait!!). Fortunately, we received much better news at this appointment. Lexi's vision is within the normal range for babies her age! She still has some hazing on her right eye and we need to continue to keep eye drops and ointment on her eyes for her reduced blink reflex. But, we were relieved that there are no current issues with her eye sight!
Finally, after another extremely long day at the hospital, we have decided to transfer all of Lexi's care to Cleveland Clinic. This is a very taxing process as we see 9 doctors! We are in the process of trying to find Dr's that will be covered by our insurance and have openings in the near future. Both of these task are becoming rather difficult and finding the time to make many phone calls is difficult. However, we feel it is in Lexi's best interest to have all of her care at the same hospital and the level of care at Cleveland Clinic has been fantastic!
Prayer Requests:
Please pray for Lexi's feeds. We meet with the speech therapist later this week to discuss our new game plan. Pray for our frustration level at having to stop her bottle feeds.
Pray for me, Cherie, as I work to get Lexi's care transferred. Pray that we are led to the right doctors at Cleveland Clinic that will give Lexi the best care possible and be knowledgeable about her condition. Pray for wisdom for these doctors.
Lexi has been extremely fussy lately. We are not sure what is wrong but she definitely appears to be in pain. Pray that the doctors will be able to find the right medicines to keep her happy.
Lexi has her mickey button procedure next Thursday, March 26th so we will keep you posted! She will be going under sedation for this and this obviously frightens us! Pray for peace as we prepare for this procedure.
Finally, the best news of all is-Lexi rolled over this week! Seven times!! We are very excited that she is making some progress! Praise God for these "baby steps" that give us hope when we need it most!
We went down to Nationwide on Friday for Lexi's swallow study. We were anxious to find out how she is doing as we have seen some major improvements in her feeds! The swallow study did not go as we had planned. Lexi started off very well, but about 6-7 minutes into the study, she aspirated. This means she swallowed liquid into her lungs instead of down her esophagus. The danger in this is that developing fluid on the lungs can lead to pneumonia. We were extremely disappointed as we were not anticipating this! We have been instructed to stop all bottle feeds with her. They did try honey-thick cereal by a spoon and she seemed to manage this ok. So, we will most likely begin giving her a very small amount of cereal for "therapeutic feeds." We are hoping to do another swallow study in the near future and are praying that for some reason this aspiration was a fluke. It is very frustrating to see Lexi make so much progress (she was up to amost an ounce!) and then to have it taken away.
We also had a visit with the opthomologist (after a 3 hour wait!!). Fortunately, we received much better news at this appointment. Lexi's vision is within the normal range for babies her age! She still has some hazing on her right eye and we need to continue to keep eye drops and ointment on her eyes for her reduced blink reflex. But, we were relieved that there are no current issues with her eye sight!
Finally, after another extremely long day at the hospital, we have decided to transfer all of Lexi's care to Cleveland Clinic. This is a very taxing process as we see 9 doctors! We are in the process of trying to find Dr's that will be covered by our insurance and have openings in the near future. Both of these task are becoming rather difficult and finding the time to make many phone calls is difficult. However, we feel it is in Lexi's best interest to have all of her care at the same hospital and the level of care at Cleveland Clinic has been fantastic!
Prayer Requests:
Please pray for Lexi's feeds. We meet with the speech therapist later this week to discuss our new game plan. Pray for our frustration level at having to stop her bottle feeds.
Pray for me, Cherie, as I work to get Lexi's care transferred. Pray that we are led to the right doctors at Cleveland Clinic that will give Lexi the best care possible and be knowledgeable about her condition. Pray for wisdom for these doctors.
Lexi has been extremely fussy lately. We are not sure what is wrong but she definitely appears to be in pain. Pray that the doctors will be able to find the right medicines to keep her happy.
Lexi has her mickey button procedure next Thursday, March 26th so we will keep you posted! She will be going under sedation for this and this obviously frightens us! Pray for peace as we prepare for this procedure.
Finally, the best news of all is-Lexi rolled over this week! Seven times!! We are very excited that she is making some progress! Praise God for these "baby steps" that give us hope when we need it most!
Thursday, March 5, 2009
Thursday, March 5
Several people have asked how Lexi's Cleveland Clinic appointment went so we thought we'd go ahead and blog again this week.
First, Lexi slept the entire way to Cleveland! This was a big improvement! She screamed the entire way home but at least we got some peace one way!
The neurologist did a lengthy exam with Lexi. The good news is that he has ruled out everything possible as far as a disease, etc that might be causing this cranial/facial nerve damage. He feels Lexi's current issues are related to her heart surgery. This is good news as this means 2 things- 1- it is hopeful that it will get better and 2- it is not going to get worse!
We feel Lexi has made huge improvements. Dr. Friedman feels she has made "some improvements" but has a long way to go to have normal facial function. He is estimating another 6-12 months minimum. He also said that many people as their nerves are regenerating tend to develop some "tics." He said the nerves sometimes don't connect quite right again. For example, some people will yawn and their eyes will blink rapidly. We hope this does not happen to Lexi as she begins to heal. The Dr. would like to see her back in 3 months and will most likely do another EMG on her at that point.
Please pray for Lexi's continued healing. This is going to be a longer road to recovery than we were hoping for. Pray for patience and encouraging moments for Jon and I.
Lexi has to be taught every simple thing- even things as basic as grasping a toy. Pray that we are able to balance our time working with Lexi and spending time with the twins (and that we might even be able to find some time for us!)
Thank you to everyone who asks us how Lexi is doing. Is is a huge encouragement to us to know that even though this is going to be a very long road, we have many people still interested AND praying for little Lexi!
First, Lexi slept the entire way to Cleveland! This was a big improvement! She screamed the entire way home but at least we got some peace one way!
The neurologist did a lengthy exam with Lexi. The good news is that he has ruled out everything possible as far as a disease, etc that might be causing this cranial/facial nerve damage. He feels Lexi's current issues are related to her heart surgery. This is good news as this means 2 things- 1- it is hopeful that it will get better and 2- it is not going to get worse!
We feel Lexi has made huge improvements. Dr. Friedman feels she has made "some improvements" but has a long way to go to have normal facial function. He is estimating another 6-12 months minimum. He also said that many people as their nerves are regenerating tend to develop some "tics." He said the nerves sometimes don't connect quite right again. For example, some people will yawn and their eyes will blink rapidly. We hope this does not happen to Lexi as she begins to heal. The Dr. would like to see her back in 3 months and will most likely do another EMG on her at that point.
Please pray for Lexi's continued healing. This is going to be a longer road to recovery than we were hoping for. Pray for patience and encouraging moments for Jon and I.
Lexi has to be taught every simple thing- even things as basic as grasping a toy. Pray that we are able to balance our time working with Lexi and spending time with the twins (and that we might even be able to find some time for us!)
Thank you to everyone who asks us how Lexi is doing. Is is a huge encouragement to us to know that even though this is going to be a very long road, we have many people still interested AND praying for little Lexi!
Sunday, March 1, 2009
Sunday, March 1
It's hard to believe that it's March! Lexi turned 4 months old yesterday and the twins were 17-months on Thursday!
Now that we have been home and are settling into more of a routine, we are definitely seeing some improvements with Lexi. A new set of therapists also started working with her from Blancherd Valley Schools and they are fantastic! The speech therapists definitely think Lexi's suck and swallow have returned. Now it is a matter of getting her to re-learn the suck-breathe-swallow pattern and then develop endurance. Lexi is also finally starting to hold her head up a little better. We have been a little frustrated at how long it is taking her to do some basic baby things. However, one of the therapist said that when they calculate development, for every week a child spebnds in the hospital, it takes them 3 weeks to catch up. This would put Lexi 18 weeks behind. She is going to need a lot of therapy and a lot of prayers to get caught up!
At Lexi's most recent neonatalist appointment, she is finally on the growth chart for weight! She is 10 lbs 9 oz and in the 5th percentile. We aren't quite there for height but we'll take it!
Finally, the neurologist from Cleveland Clinic called on Friday and has moved Lexi's appointment to this Tuesday! Jon and I will be heading to Cleveland early Tuesday afternoon. These are very lengthy in-depth appointments but we are very excited to see what the neurologist has to say since he has not seen Lexi for almost 2 months!
Prayer Requests: We are thankful for Lexi's progress with eating as she takes about 10 mls on a regular basis for each feeding. Please pray she continues to work on her eating pattern and develop endurance. Pray for our appointment at Cleveland Clinic. We are very anxious about the appointment. Also pray that Lexi does well in her car seat. She typically screams the entire trip. Pray that her new therapies work well!
Now that we have been home and are settling into more of a routine, we are definitely seeing some improvements with Lexi. A new set of therapists also started working with her from Blancherd Valley Schools and they are fantastic! The speech therapists definitely think Lexi's suck and swallow have returned. Now it is a matter of getting her to re-learn the suck-breathe-swallow pattern and then develop endurance. Lexi is also finally starting to hold her head up a little better. We have been a little frustrated at how long it is taking her to do some basic baby things. However, one of the therapist said that when they calculate development, for every week a child spebnds in the hospital, it takes them 3 weeks to catch up. This would put Lexi 18 weeks behind. She is going to need a lot of therapy and a lot of prayers to get caught up!
At Lexi's most recent neonatalist appointment, she is finally on the growth chart for weight! She is 10 lbs 9 oz and in the 5th percentile. We aren't quite there for height but we'll take it!
Finally, the neurologist from Cleveland Clinic called on Friday and has moved Lexi's appointment to this Tuesday! Jon and I will be heading to Cleveland early Tuesday afternoon. These are very lengthy in-depth appointments but we are very excited to see what the neurologist has to say since he has not seen Lexi for almost 2 months!
Prayer Requests: We are thankful for Lexi's progress with eating as she takes about 10 mls on a regular basis for each feeding. Please pray she continues to work on her eating pattern and develop endurance. Pray for our appointment at Cleveland Clinic. We are very anxious about the appointment. Also pray that Lexi does well in her car seat. She typically screams the entire trip. Pray that her new therapies work well!
Sunday, February 15, 2009
Sunday, February 15th
We made a trip down to Columbus this week for an appointment with the pediatric opthomologist. Since Lexi has severe facial nerve damage, she does not always close her eyes all the way when she is asleep. Because of this, her right eye (the same one that had the abrasion) is becoming a little "hazy." We are going to increase the frequency of her moisturizing eye drops and the opthomologist has moved her appointments up to once a month. The good news is that her corneal abrasion healed well!
We were also able to speak with the Cleveland Clinic neurologist again. They are not sure if Lexi only has facial nerve damage, which is cranial nerve seven, or if there are other cranial nerves affected. Nerves 5, 9, and 10-12 are not able to be directly tested. We have been asked to keep an eye on Lexi's "symptoms" and ask the therapists to do the same. The best way to "test" for these other nerves is simply by observation.
We have appreciate so many of you asking how Jon and I are doing. We have been so consumed with Lexi's situation, we have had little time to actually focus on being married! Thank God for our firm marriage to get us through these difficult times! We were able to get away for a little bit this weekend, which was probably the best Valentine gift!
Specific Prayer Requests:
Alexis is definitely making some progress! She sat in her bouncy seat for 20 minutes today while we got ready for church! Pray for continued progress in her "moods."
Lexi also has a swallow study scheduled for March 9th. The speech therapist is concerned that she does not have a coordinated swallow. Pray for us as we work to prepare Lexi for this test so that she is successful at it! The first swallow study did not go well at all! Pray that Lexi makes huge advances in her feeds the next few weeks!
Finally, pray for Jon and I as we work to get Lexi on some sort of a schedule. She sleeps a great deal of the day. She is typically awake for only 2-3 hours the entire day! We need to work on a schedule for her to be sure she is getting time for therapies!
We have a few doctors appointments again this week so we will update next weekend!
We were also able to speak with the Cleveland Clinic neurologist again. They are not sure if Lexi only has facial nerve damage, which is cranial nerve seven, or if there are other cranial nerves affected. Nerves 5, 9, and 10-12 are not able to be directly tested. We have been asked to keep an eye on Lexi's "symptoms" and ask the therapists to do the same. The best way to "test" for these other nerves is simply by observation.
We have appreciate so many of you asking how Jon and I are doing. We have been so consumed with Lexi's situation, we have had little time to actually focus on being married! Thank God for our firm marriage to get us through these difficult times! We were able to get away for a little bit this weekend, which was probably the best Valentine gift!
Specific Prayer Requests:
Alexis is definitely making some progress! She sat in her bouncy seat for 20 minutes today while we got ready for church! Pray for continued progress in her "moods."
Lexi also has a swallow study scheduled for March 9th. The speech therapist is concerned that she does not have a coordinated swallow. Pray for us as we work to prepare Lexi for this test so that she is successful at it! The first swallow study did not go well at all! Pray that Lexi makes huge advances in her feeds the next few weeks!
Finally, pray for Jon and I as we work to get Lexi on some sort of a schedule. She sleeps a great deal of the day. She is typically awake for only 2-3 hours the entire day! We need to work on a schedule for her to be sure she is getting time for therapies!
We have a few doctors appointments again this week so we will update next weekend!
Monday, February 9, 2009
Monday, February 9
We had a very busy weekend but wanted to be sure to once again update everyone on Alexis.
Lexi seems to be making some improvements! Every once in a while, she slowly closes her eyes as if to do a slow blink. She also has spent some time in her bouncy seat or floor gym without crying! She has been able to do this for about 10 minutes! While this seems like such a short time to most, it is a HUGE improvement for us! Lexi is also sleeping about 5 hours in her bassinet at night! We are hoping to move her into crib with her new sleep monitor this week.
In regards to feeding, Lexi is taking about 10 mls during 3 day time feedings. We are hoping she will be able to gradually increase this amount, but without facial nerve feeling, this will take some time.
She was able to get her RSV shot on Thursday but this has now led to an inner ear infection. She is pretty upset about her ear when she is awake so please pray that this mends quickly!
Finally, Parkview Church recognized Alexis on Sunday and presented her with the check from her benefit. They gave us one of the HUGE "sign" checks! It was really exciting. With much thanks to MANY, MANY people, the church raised $7,004 for Alexis' medical expenses!
We are so thankful for so many people that have supported our family both financially and through prayer. Please continue to keep us in your prayers. The reality of the situation has set in and both Jon and I are completely exhausted. Blanchard Valley School begins their services this week. While we are excited to get Lexi some additional therapy, adding even more to our schedule is a bit overwhelming. Please pray for strength and patience.
In addition, I am starting my private lessons back up, trying to do more Tastefully Simple parties and returning as the Director of Children of the Light. This is due to the fact that we found out this week that we will most likely not qualify for full funding with BCMH (Bureau for Children with Medical Handicaps). We were hoping that BCMH would be able to pick up some of the expenses the insurance company is not. But, with the help of my "side jobs" and the HUGE benefit check, we are hopeful that we can make ends meet! However, please pray for us as we budget and I try to find the time and energy to sneak in these extra things!
Please also pray for the twins as they are in such a difficult stage. This has been quite an adjustment for them as well and Jon and I hope to be able to start taking some time to spend with JUST the twins.
We will continue to update this blog weekly and pray that some day, we can report that both Lexi's heart condition and facial nerve damage has been healed!
Lexi seems to be making some improvements! Every once in a while, she slowly closes her eyes as if to do a slow blink. She also has spent some time in her bouncy seat or floor gym without crying! She has been able to do this for about 10 minutes! While this seems like such a short time to most, it is a HUGE improvement for us! Lexi is also sleeping about 5 hours in her bassinet at night! We are hoping to move her into crib with her new sleep monitor this week.
In regards to feeding, Lexi is taking about 10 mls during 3 day time feedings. We are hoping she will be able to gradually increase this amount, but without facial nerve feeling, this will take some time.
She was able to get her RSV shot on Thursday but this has now led to an inner ear infection. She is pretty upset about her ear when she is awake so please pray that this mends quickly!
Finally, Parkview Church recognized Alexis on Sunday and presented her with the check from her benefit. They gave us one of the HUGE "sign" checks! It was really exciting. With much thanks to MANY, MANY people, the church raised $7,004 for Alexis' medical expenses!
We are so thankful for so many people that have supported our family both financially and through prayer. Please continue to keep us in your prayers. The reality of the situation has set in and both Jon and I are completely exhausted. Blanchard Valley School begins their services this week. While we are excited to get Lexi some additional therapy, adding even more to our schedule is a bit overwhelming. Please pray for strength and patience.
In addition, I am starting my private lessons back up, trying to do more Tastefully Simple parties and returning as the Director of Children of the Light. This is due to the fact that we found out this week that we will most likely not qualify for full funding with BCMH (Bureau for Children with Medical Handicaps). We were hoping that BCMH would be able to pick up some of the expenses the insurance company is not. But, with the help of my "side jobs" and the HUGE benefit check, we are hopeful that we can make ends meet! However, please pray for us as we budget and I try to find the time and energy to sneak in these extra things!
Please also pray for the twins as they are in such a difficult stage. This has been quite an adjustment for them as well and Jon and I hope to be able to start taking some time to spend with JUST the twins.
We will continue to update this blog weekly and pray that some day, we can report that both Lexi's heart condition and facial nerve damage has been healed!
Saturday, January 31, 2009
Saturday, January 31st
We are sorry that it has been so long since we have blogged. We appreciate so many of you asking how Lexi is doing. Our life has been unbearably hectic. Between multiple therapists and 2-3 doctors apts a week, we struggle to keep our heads above water (or should I say above all the snow)! The twins are also at a very difficult age and throw many fits a day and must always have mommy in sight! In addition, the bills are literally PILING up and we must make multiple phone calls a day to manage Lexi's schedule and bills! "Busy" isn't even the word to describe our lives right now!
As far as Lexi is concerned, here are her most recent events:
Cardiology- The Dr. did not see any further narrowing and has moved her appointments to every 3 weeks, which will help a great deal. He is also putting Lexi on RSV injections (Synergis) to help keep her lungs clear and healthy this RSV season! However, this has been quite a process as these injections are EXTREMELY expensive (over $1,200 a month!) and hard to come by. Once we have Lexi on these shots, we will hopefully be able to take her out in public a bit more. The walls are quickly closing in on us!:-)
Neonatalist-Lexi is battling the flu bug and has been running a very high temp this past week. We have been to the ER and to see the neonatalists and after several X-rays and tests, the are sure it is just a bug. They have also found that she has a corneal abrasion on her right eye. Since she does not have a corneal reflex right now, she is not able to protect her eyes and is highly prone to infections and abrasions. We will be keeping ointments on it until it heals.
GI- we had an apt. with the GI doctor on Friday in Columbus. Her tube is healing well and she should be able to move to a button (a flat tube instead of this 8 inch one she currently has) in March. The doctor put her on a few new medications to help with her acid reflux and gas. Hopefully this will help her fussiness!
Neurology-The neurologist from Cleveland Clinic also found that Lexi has fairly elevated TSH levels. We will now be adding an endocrinologist to the list of specialist to look at putting Lexi on thyroid replacement therapy!
Therapist- Lexi's therapist were not able to come last week due to an insurance "glitch" but will start back up this next week. She continues to be very fussy but we have seen some signs of improvement. She sat in her bouncy seat for 10 minutes today without crying! This is a HUGE improvement for her! She is also sleeping in her OWN bassinet about 5 hours each night. The therapists are giving us some new ideas to help Lexi soothe. Hopefully these will help!
Finally, we want to thank EVERYONE who came to support us at the benefit last weekend. The efforts of our friends and family really paid off as we sold 800 meals! Parkview Church will be presenting us with a check on February 8th during the AM service. You are, of course, welcome to attend as we hope to bring Lexi to her first church service that day as well! We were overwhelmed with the turn-out! We cannot express how much it meant to us. More than any amount of money the benefit brings, Jon and I especially needed a boost like this to show us how much we (and little Lexi of course) are loved and supported. So, from our entire family- THANK YOU!
After this lengthy blog, I promise to try to do better at updating this every weekend! Lexi has a very long road to recovery. She is no longer on the height and weight chart and is very behind developmentally. This is going to be a very long and trying process for our entire family and we appreciate your continued prayers and support!
Prayer Requests:
Pray for our family right now as we struggle to get both Lexi and the twins on some sort of a routine. I literally try to survive each day, especially with my parents in Florida for 2 weeks and my sister Holly becoming more and more pregnant! It is very difficult to manage all 3 kids at the same time and this makes for very long and frustrating days. Pray for strength and patience!
Pray for Lexi's fussiness and that she will be able to get her RSV shots started soon! We would really like to bring her to church on the 8th!
As far as Lexi is concerned, here are her most recent events:
Cardiology- The Dr. did not see any further narrowing and has moved her appointments to every 3 weeks, which will help a great deal. He is also putting Lexi on RSV injections (Synergis) to help keep her lungs clear and healthy this RSV season! However, this has been quite a process as these injections are EXTREMELY expensive (over $1,200 a month!) and hard to come by. Once we have Lexi on these shots, we will hopefully be able to take her out in public a bit more. The walls are quickly closing in on us!:-)
Neonatalist-Lexi is battling the flu bug and has been running a very high temp this past week. We have been to the ER and to see the neonatalists and after several X-rays and tests, the are sure it is just a bug. They have also found that she has a corneal abrasion on her right eye. Since she does not have a corneal reflex right now, she is not able to protect her eyes and is highly prone to infections and abrasions. We will be keeping ointments on it until it heals.
GI- we had an apt. with the GI doctor on Friday in Columbus. Her tube is healing well and she should be able to move to a button (a flat tube instead of this 8 inch one she currently has) in March. The doctor put her on a few new medications to help with her acid reflux and gas. Hopefully this will help her fussiness!
Neurology-The neurologist from Cleveland Clinic also found that Lexi has fairly elevated TSH levels. We will now be adding an endocrinologist to the list of specialist to look at putting Lexi on thyroid replacement therapy!
Therapist- Lexi's therapist were not able to come last week due to an insurance "glitch" but will start back up this next week. She continues to be very fussy but we have seen some signs of improvement. She sat in her bouncy seat for 10 minutes today without crying! This is a HUGE improvement for her! She is also sleeping in her OWN bassinet about 5 hours each night. The therapists are giving us some new ideas to help Lexi soothe. Hopefully these will help!
Finally, we want to thank EVERYONE who came to support us at the benefit last weekend. The efforts of our friends and family really paid off as we sold 800 meals! Parkview Church will be presenting us with a check on February 8th during the AM service. You are, of course, welcome to attend as we hope to bring Lexi to her first church service that day as well! We were overwhelmed with the turn-out! We cannot express how much it meant to us. More than any amount of money the benefit brings, Jon and I especially needed a boost like this to show us how much we (and little Lexi of course) are loved and supported. So, from our entire family- THANK YOU!
After this lengthy blog, I promise to try to do better at updating this every weekend! Lexi has a very long road to recovery. She is no longer on the height and weight chart and is very behind developmentally. This is going to be a very long and trying process for our entire family and we appreciate your continued prayers and support!
Prayer Requests:
Pray for our family right now as we struggle to get both Lexi and the twins on some sort of a routine. I literally try to survive each day, especially with my parents in Florida for 2 weeks and my sister Holly becoming more and more pregnant! It is very difficult to manage all 3 kids at the same time and this makes for very long and frustrating days. Pray for strength and patience!
Pray for Lexi's fussiness and that she will be able to get her RSV shots started soon! We would really like to bring her to church on the 8th!
Tuesday, January 20, 2009
Saturday, January 10th
I'm sorry we did not blog yesterday. We had several doctors apts and things were a little crazy!Lexi had her 1st out-patient cardiology appointment yesterday. Her supra-valvular aortic stenosis narrowing (the newest one they've found) is still mild. However, her coarctation site has some more significant narrowing again. The good news is that although her echo-cardiogram shows some moderate narrowing, Lexi still has good pulses and blood pressure in her arm and leg. At this point, they have moved her appointments up to every 2 weeks where they will do an echo-cardiogram each time and keep a very close eye on her. The cardiologist has also told us that we should not be taking Lexi out in large groups, especially this time of year. They will be putting her on shots to help her lungs remain clear during the RSV/cold season. (However, we still hope to bring her to the benefit next Saturday so all of Lexi's supporters can meet her!)The neurologist from Cleveland Clinic also called early yesterday evening to speak with us. We took Lexi to Cleveland on Wednesday for a 2-hour EMG test. For this test, they actually stuck small needles in her face, tongue and legs to check her neuro-muscular connections. The neurologist said that Lexi has severe facial nerve damage. He does not know how only her facial nerves were damaged during or after her heart surgery, but for some strange reason, her 7th cranial nerve has been severely affected. Dr. Freidman said that there are two areas where this damage can start- either in the actual nuclei of the nerve within the brainstem or shortly after the nerve leaves the brainstem. If the damage is in the brainstem itself, Lexi's condition will very likely not improve. If the damage is after the nerve leaves the brainstem, she will hopefully improve. However, the neurologist said that her nerve damage is so severe, that this will take a very long time. We will not see him again for 2 months because he wants to wait and see if there are any signs of improvement at this point. Unfortunately, the facial nerve obviously aids in Lexi's blinking, eating and speech. While this is very difficult to hear, we are at least glad that we are finally getting some answers as to what Lexi's current condition is and what this means for her future.
Prayer Requests:
Pray for Lexi's aortic narrowing. Pray that it does not get worse and that we can avoid another surgery for some time. We are asking for many prayers for Lexi's facial nerve. Although the neurologist has said that it will take a very long time, if ever, to heal, we know that God can heal her quickly! Pray that this is the case so Lexi does not face even more challenges in her development.
Pray for traveling for me, Lexi and other family members as we run to multiple appointments every week in Findlay, Lima, Cleveland and Columbus.
Prayer Requests:
Pray for Lexi's aortic narrowing. Pray that it does not get worse and that we can avoid another surgery for some time. We are asking for many prayers for Lexi's facial nerve. Although the neurologist has said that it will take a very long time, if ever, to heal, we know that God can heal her quickly! Pray that this is the case so Lexi does not face even more challenges in her development.
Pray for traveling for me, Lexi and other family members as we run to multiple appointments every week in Findlay, Lima, Cleveland and Columbus.
Friday, January 9, 2009
Friday, January 9
This week Lexi met with the neonatalists here in Findlay. She is gaining weight at an acceptable rate (she is 10 weeks and 8 lbs 14 oz) so we have been able to move her feeds to every 4 hours and feed her over the course of an hour. Gaining an extra hour between feeds has been a big help. This week, the home nurse and Physical Therapist came to do their initial evaluations and tomorrow and Sunday we will be seeing OT and Speech (who will help her with feeding). It looks as though we will have 1-2 doctors apts a week and then see a nurse, PT, OT and speech in our home 2 times a week as well as a developmental specialists. We are realizing that it is going to become very difficult to arrange all of these schedules and try to manage the twins during all of Lexi's therapies.
Perhaps the most frustrating thing this week is that Lexi's feeding tube pops open constantly. The opening to her tube apparently is faulty. It comes open and leaks formula everywhere! Unfortunately, until her incision heals, they cannot replace the tube. This is typically 2-3 months! For now, we will have to watch it closely and keep tape over it to prevent it from opening. I will be speaking with the Cleveland Clinic neurologist on Monday so we are praying that he has some additional answers after examining her records.
Prayer Requests:
Pray for scheduling. As we mentioned, Lexi will begin seeing numerous doctors and therapist in the upcoming weeks. Pray that we are able to coordinate all of our schedules to accommodate the appointments. Pray for our conversation with the Cleveland Clinic Neurologists that they will have answers for Lexi's problems.
Perhaps the most frustrating thing this week is that Lexi's feeding tube pops open constantly. The opening to her tube apparently is faulty. It comes open and leaks formula everywhere! Unfortunately, until her incision heals, they cannot replace the tube. This is typically 2-3 months! For now, we will have to watch it closely and keep tape over it to prevent it from opening. I will be speaking with the Cleveland Clinic neurologist on Monday so we are praying that he has some additional answers after examining her records.
Prayer Requests:
Pray for scheduling. As we mentioned, Lexi will begin seeing numerous doctors and therapist in the upcoming weeks. Pray that we are able to coordinate all of our schedules to accommodate the appointments. Pray for our conversation with the Cleveland Clinic Neurologists that they will have answers for Lexi's problems.
Friday, January 2, 2009
Friday, January 2
We hope you all had a Happy New Year! My dad and I left at 6:15am to drive to Cleveland Clinic. It was definitely a long drive as Lexi hates car seats! We had no troubles finding the pediatric neurology clinic, which is amazing due to the size of Cleveland Clinic! We met with Dr. Friedman, one of the pediatric neurologists, for an hour today and he gave Lexi a very through exam. He too is "puzzled" by her condition and has never seen it before. He threw out a couple of "thoughts" but would like to take next week to look through her huge stack of medical records, talk with the pediatric cardiology team and the opthamologists to get their take on her condition. For now, he feels we are doing everything we can- keeping her weight up, working on her feeding orally, and keeping her eyes moistened and protected as much as possible since she doesn't have a corneal reflex. In addition, Lexi's gag is still present but very weak.
He will be getting back with us this next week to discuss some further testing. Our home healthcare begins this week. We also hope to begin Lexi's feeding therapy, OT and PT as soon as possible. These will hopefully add some much needed relief for us! We are meeting with the neonatal specialists in Findlay this week as well.
Prayer Requests:
Please continue to pray for Lexi's condition. She currently has 2 states- sleeping and crying. She does not "coo" and is, for the most part, a very unhappy baby. While we definitely understand her being unhappy, this makes for very long days and even longer nights!
We are EXTREMELY excited for an improvement in Lexi's feeding. With help from us (we pull her cheeks in to make her lips into an "ooo") Lexi has taken up to 10mls of formula!! She usually will take at least 3-4 mls a day. While this is small, it is an answer to prayer that she is at least taking something!
Pray for Jon and I as we work through insurance issues. We found out on Wednesday that our Home health nurse program is not in-network so, at this point, we will have to pay 40% of every visit. We are working with the insurance company and asking them to make an exception! Pray that we are able to make this happen!
Finally, we plan to to update the blog every weekend (usually Friday evenings). We may update periodically throughout the week but promise to update at least once a week. We appreciate so many of you asking for her updates and GREATLY appreciate your prayers. Lexi is still in much need of a lot of prayers and it is our hope that God will heal her either through medical intervention or through His divine healing!
He will be getting back with us this next week to discuss some further testing. Our home healthcare begins this week. We also hope to begin Lexi's feeding therapy, OT and PT as soon as possible. These will hopefully add some much needed relief for us! We are meeting with the neonatal specialists in Findlay this week as well.
Prayer Requests:
Please continue to pray for Lexi's condition. She currently has 2 states- sleeping and crying. She does not "coo" and is, for the most part, a very unhappy baby. While we definitely understand her being unhappy, this makes for very long days and even longer nights!
We are EXTREMELY excited for an improvement in Lexi's feeding. With help from us (we pull her cheeks in to make her lips into an "ooo") Lexi has taken up to 10mls of formula!! She usually will take at least 3-4 mls a day. While this is small, it is an answer to prayer that she is at least taking something!
Pray for Jon and I as we work through insurance issues. We found out on Wednesday that our Home health nurse program is not in-network so, at this point, we will have to pay 40% of every visit. We are working with the insurance company and asking them to make an exception! Pray that we are able to make this happen!
Finally, we plan to to update the blog every weekend (usually Friday evenings). We may update periodically throughout the week but promise to update at least once a week. We appreciate so many of you asking for her updates and GREATLY appreciate your prayers. Lexi is still in much need of a lot of prayers and it is our hope that God will heal her either through medical intervention or through His divine healing!
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