Saturday, February 13, 2010
Post eye-surgery, Feb 13th
We are home with Lexi! She did really well yesterday. We are constantly amazed at her strength and tolerance of all the poking and prodding she goes through! She's our little trooper! Lexi is very swollen and has bloody eyes, but surgery went well and there is a 70% success rate! The best news yesterday was that the MRI dept was running behind 2 hours- we were frustrated at 1st, but the opthomologist was literally sitting around waiting for Lexi to show up for her eye surgery. So, she was only sedated for about 6 hours instead of 8 or 9! (Blessings in disguise-we love it!) We will talk with the neurosurgeon about her MRI results later this coming week. We will know more about the success of her eye surgery in 3-4 weeks as her brain now has to "reset" to her new eye position. Please keep us in your prayers this week as Lexi is not to be out much because of her high risk for eye infections. Also, Lexi is supposed to do "resting activities" for a week- should be interesting with 3 littles ones! Thank you all foor your prayers. I can't begin to tell you how hard it is to hand your little baby over to a team of doctors and watch them "go to work" on her- it's perhaps the most difficult thing we've had to do! Your prayers give us the inner strength we need!
Tuesday, February 9, 2010
Tuesday, February 9th- Eye surgery!!
We received a call on Monday that Cleveland Clinic has moved Lexi's brain MRI and eye surgery up to Friday due to some scheduling issues. Due to the weather today and tomorrow, we will be cramming all of her pre-op appts in on Thursday afternoon in Cleveland. Jon and I will stay overnight with Lexi Thursday in Cleveland.
Lexi goes in for her sedation at 9am Friday morning. They will then do a 3 hour brain MRI and flow study to assess her chiara malformation- this was at the request of the neurosurgeon. They will then keep her under anesthesia and transfer her 2 blocks to the surgery center where she will be the 1st surgery in the afternoon. The opthomologist will go into both eyes, cut the eye muscles, pull them tighter and then put very tiny stitches in the muscles. This should be at least a temporary fix to her "cross-eyes" due to her cranial nerve damage! Lexi will be under anesthesia for 8-9 hours throughout this process. Lexi has been experiencing extreme bouts of reflux this past week and this is an added issue with her being on a ventilator and under anesthesia for this length of time.
Specific Prayer Requests:
Please pray for Lexi as this is a very long time, especially a small heart patient, to be under.
Pray for her anesthesiolgist that will be with her during the entire process and for the doctors doing both the MRI and the eye surgery. We are hopeful that she will be able to come on Saturday!
Pray that the results of her MRI scan show a miraculous difference in her chiari malformation and that Lexi will NOT need brain surgery this spring!
Finally, please keep my sister, Holly, in your prayers as she will have the twins during this time as well as her two little boys!
We will give an update this weekend!
Lexi goes in for her sedation at 9am Friday morning. They will then do a 3 hour brain MRI and flow study to assess her chiara malformation- this was at the request of the neurosurgeon. They will then keep her under anesthesia and transfer her 2 blocks to the surgery center where she will be the 1st surgery in the afternoon. The opthomologist will go into both eyes, cut the eye muscles, pull them tighter and then put very tiny stitches in the muscles. This should be at least a temporary fix to her "cross-eyes" due to her cranial nerve damage! Lexi will be under anesthesia for 8-9 hours throughout this process. Lexi has been experiencing extreme bouts of reflux this past week and this is an added issue with her being on a ventilator and under anesthesia for this length of time.
Specific Prayer Requests:
Please pray for Lexi as this is a very long time, especially a small heart patient, to be under.
Pray for her anesthesiolgist that will be with her during the entire process and for the doctors doing both the MRI and the eye surgery. We are hopeful that she will be able to come on Saturday!
Pray that the results of her MRI scan show a miraculous difference in her chiari malformation and that Lexi will NOT need brain surgery this spring!
Finally, please keep my sister, Holly, in your prayers as she will have the twins during this time as well as her two little boys!
We will give an update this weekend!
Tuesday, January 12, 2010
January 12- New Year, new updates
Happy New Year! We hope everyone had a blessed holiday season! We were so thankful to be home with our family this year enjoying a much healthier and happier New Year. Despite her many set-backs and delays this past year, we are so thankful for the progress Lexi has made. She is a real trooper! We also appreciate everyone's continued prayers and concerns for her. One of my good friends put it very well. Lexi's condition is going to be a very long marathon, not a sprint as we originally thought. Pray that we have the endurance she needs!
We went to Cleveland Clinic last Monday and yesterday. The roads yesterday were the worst I have ever experienced and it took my sister Holly and I 4 1/2 hours to get home last evening! But, we were thankful to make it home safely with the terrible road conditions.
Last week, we saw Neurology. Dr. Friedman is very pleased with Lexi's progress. He is confident that her cranial nerve damage is getting better, but does not know if she will fully recover from the damage she suffered. He said the most difficult thing to hear from impatient people- "give it more time!" We were happy to see that he was pleased with the progress she has made, however, since he is the 1st doctor to see her at Cleveland Clinic exactly 1 year ago!
This week, Lexi saw 4 doctors. ENT (ear, nose & throat) did a swallow study with a scope in the office. The good news is Lexi is not aspirating! The bad news is that because of her cranial nerve damage, she can't control liquids and has no chewing motion. They are having us thicken her food even more and continue therapy. The head of pediatric speech pathology helped with the swallow study and afterwards talked with me about Lexi's unique situation. She has agreed to see Lexi every two weeks when we see the feeding clinic. It's our hope that we can get Lexi communicating, most likely by sign language, in the next few months!
We then saw GI and, since Lexi has been extra fussy that past few weeks and throwing up, they have moved her to yet another formula. This formula costs $150 for 4 cans!! Yikes! I am working today on getting it approved through insurance- please pray that they will approve this highly specialized formula! Lexi has lost over 1 pound this past week as well. She is back down to 17lbs 12 oz. This is very discouraging to us! We are praying this new formula puts her back on the weight-gaining track. (Why is it that she LOSES and I GAIN??- I think we need to get his figured out!) :-)
After GI, we were finally able to see the neurosurgeon. Dr. Luciano spent some time with us and walked us through her MRI scans. There are 2 areas of concern on her MRI. He feels that most of Lexi's symptoms are related to her cranial nerve damage during her heart surgery, most likely from loss of blood flow during surgery. However, he does think that a few of her symptoms are related to her chiari malformation as well. So, he is planning yet another MRI for Lexi along with a flow study of her brain. After this, he will meet with us again to discuss the results and the likelihood of brain surgery. They are hoping to do her MRI while she is already sedated during her eye surgery, which is now scheduled for February 15th.
Finally, we had a 2 hour appointment with the sleep disorders clinic. The neuro-sleep doctor is pretty sure that Lexi has sleep apnea. We are very glad that the GI and ENT doctors insisted we have this checked as sleep apnea can put extra stress on your heart! So, we will be doing a 12 hour sleep study at the clinic on February 9th and 10th.
Lexi is getting stronger (and more ornery) and is finally starting to sit-up on her own! Please pray for her continued therapy as well. Jon and I still struggle to find the necessary time to work with her on speech, OT and PT.
Specific Prayer Requests:
Please pray for continued healing for Lexi. We are praying specifically that she recovers fully from her cranial nerve damage and that the healing is quicker than the doctors would ever expect! We are also praying that the 2 areas of concern to the neurosurgeon would come back clear so Lexi does not need surgery!
Pray for our trips to Cleveland as the roads are very slippery during the winter- especially in Cleveland!
Finally, pray for our family as we continue to try to manage all of Lexi's care and deal with twins in their terrible two's! Pray for strength, wisdom and patience.
We will update again in a few weeks when we find out more information on Lexi's eye surgery and her MRI.
We went to Cleveland Clinic last Monday and yesterday. The roads yesterday were the worst I have ever experienced and it took my sister Holly and I 4 1/2 hours to get home last evening! But, we were thankful to make it home safely with the terrible road conditions.
Last week, we saw Neurology. Dr. Friedman is very pleased with Lexi's progress. He is confident that her cranial nerve damage is getting better, but does not know if she will fully recover from the damage she suffered. He said the most difficult thing to hear from impatient people- "give it more time!" We were happy to see that he was pleased with the progress she has made, however, since he is the 1st doctor to see her at Cleveland Clinic exactly 1 year ago!
This week, Lexi saw 4 doctors. ENT (ear, nose & throat) did a swallow study with a scope in the office. The good news is Lexi is not aspirating! The bad news is that because of her cranial nerve damage, she can't control liquids and has no chewing motion. They are having us thicken her food even more and continue therapy. The head of pediatric speech pathology helped with the swallow study and afterwards talked with me about Lexi's unique situation. She has agreed to see Lexi every two weeks when we see the feeding clinic. It's our hope that we can get Lexi communicating, most likely by sign language, in the next few months!
We then saw GI and, since Lexi has been extra fussy that past few weeks and throwing up, they have moved her to yet another formula. This formula costs $150 for 4 cans!! Yikes! I am working today on getting it approved through insurance- please pray that they will approve this highly specialized formula! Lexi has lost over 1 pound this past week as well. She is back down to 17lbs 12 oz. This is very discouraging to us! We are praying this new formula puts her back on the weight-gaining track. (Why is it that she LOSES and I GAIN??- I think we need to get his figured out!) :-)
After GI, we were finally able to see the neurosurgeon. Dr. Luciano spent some time with us and walked us through her MRI scans. There are 2 areas of concern on her MRI. He feels that most of Lexi's symptoms are related to her cranial nerve damage during her heart surgery, most likely from loss of blood flow during surgery. However, he does think that a few of her symptoms are related to her chiari malformation as well. So, he is planning yet another MRI for Lexi along with a flow study of her brain. After this, he will meet with us again to discuss the results and the likelihood of brain surgery. They are hoping to do her MRI while she is already sedated during her eye surgery, which is now scheduled for February 15th.
Finally, we had a 2 hour appointment with the sleep disorders clinic. The neuro-sleep doctor is pretty sure that Lexi has sleep apnea. We are very glad that the GI and ENT doctors insisted we have this checked as sleep apnea can put extra stress on your heart! So, we will be doing a 12 hour sleep study at the clinic on February 9th and 10th.
Lexi is getting stronger (and more ornery) and is finally starting to sit-up on her own! Please pray for her continued therapy as well. Jon and I still struggle to find the necessary time to work with her on speech, OT and PT.
Specific Prayer Requests:
Please pray for continued healing for Lexi. We are praying specifically that she recovers fully from her cranial nerve damage and that the healing is quicker than the doctors would ever expect! We are also praying that the 2 areas of concern to the neurosurgeon would come back clear so Lexi does not need surgery!
Pray for our trips to Cleveland as the roads are very slippery during the winter- especially in Cleveland!
Finally, pray for our family as we continue to try to manage all of Lexi's care and deal with twins in their terrible two's! Pray for strength, wisdom and patience.
We will update again in a few weeks when we find out more information on Lexi's eye surgery and her MRI.
Thursday, December 3, 2009
December 3- Changes and Frustration!
(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!
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!
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!
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