It is amazing to us that it is already July! Time just zooms by when you have 3 little ones! We are so thankful that we have managed to NOT have any Cleveland Clinic trips this month. For the month of July, we only have a few local doctors appointments and our weekly therapy sessions. Here's what's happening with Lexi:
Lexi has really been taking off in large motor! She is pulling to stand all the time! In fact, she only wants to stand and when you make her sit down, she gets really mad. She has also been saying some new words and doing a few signs. No crawling yet, but we are getting closer every week. Obviously, she is SIGNIFICANTLY behind kids her age, but Lexi's just not like other kids- she's super cute and super unique!:-)
We have decided, however, since things with her speech and especially her eating are not progressing as we would like, we are looking for additional therapies and treatments for her. We have found a newer therapy that is FDA approved called Vital Stim therapy. We have been fortunate enough to find a speech therapist in Fostoria that is able to do this therapy on infants. Vital Stim is basically an electrode therapy that sends small currents into her face and neck to stimulate swallowing. Unfortunately, the therapist is a 40 minute drive from our house and, starting today, we will be trying to go 2-3 times per week! This will be in addition to her weekly OT, PT and speech at the outpatient rehab in Findlay and her weekly visits from Blanchard Valley therapists. But, we are hoping (and praying!) that it is going to help her swallowing as she is STILL aspirating on liquids.
In addition, we have found and done extensive research on a newer treatment called the sensory learning program. A lot of kids that have major trauma early in their life tend to have sensory integration issues. Lexi scratches herself until she bleeds, grinds her teeth, has strong aversions to textures in foods and tends to flap her hands. Jon and I attended a 2-hour session on the program this week and again, we really think it can be a help to Lexi. The program uses light (visual), sound (auditory) and movement (vestibular) to help "re-program" the neuro-pathways in the brain. However (again), we will have to commit to a consecutive 12-day session in Toledo- TWO times a day followed by 18 days of therapy at home. The cost of the program is $3200 and, of course, is not covered by any of our insurance. I have been spending hours on the computer searching for grants to help cover this but a majority of grants wont' cover "alternative" therapy (even though it's done BY a doctor IN a doctor's office!). However, at this point, we will do whatever we can to help Lexi improve. Even if this program helps her simply stop scratching herself- it would be worth it to us! If you're curious about it, you can check it out at sensorylearning-toledo.com
Prayer Requests:
Please pray that we are able to manage our time as we add vital stim therapy to Lexi's round of treatments. Pray that I am able to find childcare for the twins while I take almost 3 hours a day, 2-3 times a week to run Lexi to vital stim therapy.
Pray that we are led to the right grants and resources to help us cover even part of this Sensory Learning Program. If not, pray we can find ways to cut our budget even further to help with the costs of the treatment.
We will be heading to Cleveland Clinic at the very beginning of August for 9 appointments in 2 days and then 2 other times in August, as well as a trip to Columbus to see a pediatric developmental specialist again. We plan to enjoy the month of July before the crazy trips start again! Happy Summer and thank you for your continued prayers!
Friday, July 9, 2010
Thursday, June 3, 2010
Thursday, June 3rd- still a peanut!
I am thankful for the many people we run into either at church, the grocery store, on FB, etc that tell us they read Lexi's blog and are praying for her and us! It reminds me to take the time out of our hectic days to update everyone on Miss Lexi Mae!
We went to Cleveland Clinic last week and they did another scope/swallow study on Lexi. For this procedure, we literally hold her head and body down and they stick a tiny camera down her nose and into her throat (yes- she SCREAMS!). Then, they feed her various consistencies of food to see if she clears it or if she aspirates (Liquid goes into her lungs). Unfortunately, Lexi aspirated on slightly thickened juice. This was disappointing as we were hoping she was getting better at controlling things in her mouth. For now, we will continue to thicken anything that goes into her mouth and repeat the study in 4 months.
We saw the pediatric hospitalists today at our local hospital. He is helping us monitor Lexi's growth and development since we are not seeing the feeding clinic weekly any more. We were REALLY hoping Lexi would hit the 20 lb mark, but, she's at 19lbs 13oz. (This is what the twins were at EIGHT months old- Lexi is 19 months). It is hard to not blame yourself as a parent and we keep asking "what are we doing wrong?" For the next month, we just have to make sure that we give her every drop of every feed and encourage her to take as much as she can by mouth (which is what we HAVE been doing). We're also going to really start praying that she can start gaining weight, or it's back to Cleveland Clinic for more testing. However, Lexi DID at least gain a little weight so we are heading the right direction!:-) She is just not making many strides in her oral feeding and we are becoming concerned that this might not ever get better!
We are very thankful for our break from Cleveland Clinic trips- we don't have to go back until June 17th to talk to Opthomology about her next eye surgery!
At 1 1/2 years old, it's easy to look at all the things Lexi "can't" do, but we recently had her goal review meeting with her Early Intervention program and it was encouraging to see the strides she has made! Lexi can't do a lot for most kids her age, but she has made HUGE improvements the past few months. She is working really hard to crawl and is almost ready to pull to stand on her own. She is saying a few words- "dada" is the favorite but she also says "nana" (meaning Mama!) "good girl,"" all done", "up", "ouch" (poor baby!) and "Ally" (her oldest twin sister). She also does the motions for "so big." We have learned that we can't look at Lexi as a typical 1 1/2 year old. We have to look at her for how much she has gone through and how far she has come!
Prayer Requests:
I leave on Children of the Light tour on Monday. Children of the Light is a singing group sponsored by Youth for Christ here in Findlay and I am the director of the group. I completely set up and run the entire trip- we're going to Viriginia. I have to leave all the kids and Jon for a week and I'm having a really difficult time. Pray for Jon as he works all week and then has all 3 kids by himself all evening. Pray that he finds the time to keep Lexi's feeds up and all her therapy sessions.
Pray for GROWTH for Lexi. The poor baby still has to be rear-facing in a car seat! We're ready for Lexi to be "so big!"
We went to Cleveland Clinic last week and they did another scope/swallow study on Lexi. For this procedure, we literally hold her head and body down and they stick a tiny camera down her nose and into her throat (yes- she SCREAMS!). Then, they feed her various consistencies of food to see if she clears it or if she aspirates (Liquid goes into her lungs). Unfortunately, Lexi aspirated on slightly thickened juice. This was disappointing as we were hoping she was getting better at controlling things in her mouth. For now, we will continue to thicken anything that goes into her mouth and repeat the study in 4 months.
We saw the pediatric hospitalists today at our local hospital. He is helping us monitor Lexi's growth and development since we are not seeing the feeding clinic weekly any more. We were REALLY hoping Lexi would hit the 20 lb mark, but, she's at 19lbs 13oz. (This is what the twins were at EIGHT months old- Lexi is 19 months). It is hard to not blame yourself as a parent and we keep asking "what are we doing wrong?" For the next month, we just have to make sure that we give her every drop of every feed and encourage her to take as much as she can by mouth (which is what we HAVE been doing). We're also going to really start praying that she can start gaining weight, or it's back to Cleveland Clinic for more testing. However, Lexi DID at least gain a little weight so we are heading the right direction!:-) She is just not making many strides in her oral feeding and we are becoming concerned that this might not ever get better!
We are very thankful for our break from Cleveland Clinic trips- we don't have to go back until June 17th to talk to Opthomology about her next eye surgery!
At 1 1/2 years old, it's easy to look at all the things Lexi "can't" do, but we recently had her goal review meeting with her Early Intervention program and it was encouraging to see the strides she has made! Lexi can't do a lot for most kids her age, but she has made HUGE improvements the past few months. She is working really hard to crawl and is almost ready to pull to stand on her own. She is saying a few words- "dada" is the favorite but she also says "nana" (meaning Mama!) "good girl,"" all done", "up", "ouch" (poor baby!) and "Ally" (her oldest twin sister). She also does the motions for "so big." We have learned that we can't look at Lexi as a typical 1 1/2 year old. We have to look at her for how much she has gone through and how far she has come!
Prayer Requests:
I leave on Children of the Light tour on Monday. Children of the Light is a singing group sponsored by Youth for Christ here in Findlay and I am the director of the group. I completely set up and run the entire trip- we're going to Viriginia. I have to leave all the kids and Jon for a week and I'm having a really difficult time. Pray for Jon as he works all week and then has all 3 kids by himself all evening. Pray that he finds the time to keep Lexi's feeds up and all her therapy sessions.
Pray for GROWTH for Lexi. The poor baby still has to be rear-facing in a car seat! We're ready for Lexi to be "so big!"
Wednesday, May 5, 2010
Wednesday, May 5th- Postponed again!
My sister Holly and I traveled to Cleveland Clinic yesterday with Lexi. Here's the latest on our marathon:
We were able to see Lexi's neurologist, Dr. Friedman, who has seen Lexi from the very beginning on her issues following heart surgery. He has been working directly with a separate neurosurgeon from Rainbow Babies in Cleveland in regards to Lexi. Dr Friedman agrees that we can (and should) at this point, postpone Lexi's chiari brain surgery. Developmentally, Lexi has really taken off the last month or so. Lexi is starting to babble, get on her hands and knees and is even starting to pull herself up to stand. Her developmental pediatrician would really hate to see us interrupt her developmental upswing with brain surgery. However, due to the size of her brain stem herniation, we will have to keep a close eye on her, do our best to ensure she receives no injuries to her head, and then re-evaluate her in 4 months. Both the neurologist and 3 neurosurgeons we have seen all have said that Lexi will have to have brain surgery by the time she is 3 (within the next 18 months). However, we really need to work on getting her bigger to help her chances with a successful recovery. The neurologist said that, in rare occasion, they have seen chiaris get a little better- so we're just going to hope and pray for another little miracle with Miss Lexi Mae.
While we are very glad that Lexi's surgery is able to be postponed for the time being, we were a little disappointed by our trip to the feeding clinic. I was really hoping for the 20 lb mark so we can finally get Lexi in a forward-facing "big girl" car seat. However, Lexi didn't gain weight- she LOST weight in the last 5 weeks! She is 19lbs 1.5 oz at 18 months old. So, we are now going to keep a food journal of absolutely everything Lexi takes- from 5 sips of juice to her tube feeds. We're hoping this will help make a difference next month when we see the feeding clinic again.
Please pray for:
Energy-between doctors and therapists, Lexi has 9 appointments this week! Pray for all my various family members watching the twins while I run Lexi all over the state.
Pray for Lexi's chiari (pronounced kee-ar-ee). Pray that, in 4 months, the doctors will see less of a herniation and we can continue to postpone brain surgery. Please also pray that Jon and I will have a peace about postponing surgery and that we won't constantly be second-guessing ourselves.
Pray for Lexi's weight gain. We have had a baby for the last 18 months. We are ready for a toddler! Pray for a lot of weight gain AND a lot of developmental improvements this next month!
Thank you so much for your continued prayers and support! We go back to Cleveland on May 17th so we will try to update after her next round of appointments!
We were able to see Lexi's neurologist, Dr. Friedman, who has seen Lexi from the very beginning on her issues following heart surgery. He has been working directly with a separate neurosurgeon from Rainbow Babies in Cleveland in regards to Lexi. Dr Friedman agrees that we can (and should) at this point, postpone Lexi's chiari brain surgery. Developmentally, Lexi has really taken off the last month or so. Lexi is starting to babble, get on her hands and knees and is even starting to pull herself up to stand. Her developmental pediatrician would really hate to see us interrupt her developmental upswing with brain surgery. However, due to the size of her brain stem herniation, we will have to keep a close eye on her, do our best to ensure she receives no injuries to her head, and then re-evaluate her in 4 months. Both the neurologist and 3 neurosurgeons we have seen all have said that Lexi will have to have brain surgery by the time she is 3 (within the next 18 months). However, we really need to work on getting her bigger to help her chances with a successful recovery. The neurologist said that, in rare occasion, they have seen chiaris get a little better- so we're just going to hope and pray for another little miracle with Miss Lexi Mae.
While we are very glad that Lexi's surgery is able to be postponed for the time being, we were a little disappointed by our trip to the feeding clinic. I was really hoping for the 20 lb mark so we can finally get Lexi in a forward-facing "big girl" car seat. However, Lexi didn't gain weight- she LOST weight in the last 5 weeks! She is 19lbs 1.5 oz at 18 months old. So, we are now going to keep a food journal of absolutely everything Lexi takes- from 5 sips of juice to her tube feeds. We're hoping this will help make a difference next month when we see the feeding clinic again.
Please pray for:
Energy-between doctors and therapists, Lexi has 9 appointments this week! Pray for all my various family members watching the twins while I run Lexi all over the state.
Pray for Lexi's chiari (pronounced kee-ar-ee). Pray that, in 4 months, the doctors will see less of a herniation and we can continue to postpone brain surgery. Please also pray that Jon and I will have a peace about postponing surgery and that we won't constantly be second-guessing ourselves.
Pray for Lexi's weight gain. We have had a baby for the last 18 months. We are ready for a toddler! Pray for a lot of weight gain AND a lot of developmental improvements this next month!
Thank you so much for your continued prayers and support! We go back to Cleveland on May 17th so we will try to update after her next round of appointments!
Wednesday, April 21, 2010
Wednesday, April 21st- How many "opinions" can you have?
Many have been asking how things are going with Lexi and what the nuerosurgeon from Toledo said on Friday. And so- it's time for an update!
We went to Toledo- St V's hospital on Friday and met with a pediatric neurosurgeon. She spent almost an hour talking with us and looking over Lexi's MRI studies. This Dr. said that, based on Lexi's current "symptoms" (or lack thereof), that she would actually NOT operate right now. She would keep a very close eye on her, do repeat MRIs every 2-3 months and try to get her a little bigger. She also feels strongly (and says studies have shown) that Lexi should have the dura patch done as well as the bone removal. During the dura patch, the brain itself is actually opened which increases the chance of spinal fluid leaking out. This would mean a much more extensive hospital stay and MUCH more recovery time.
We then went to Cleveland Clinic on Monday to see the sleep neurologist. Lexi does have central sleep apnea- every so often,, her brain "forgets" to tell her body to breathe. They do feel it is fairly mild and that her chiari and severe reflux are the cause. The Dr would like us to have the chiari surgery and possibly a fundoplication surgery (where they actually wrap the stomach around the esophagus and sew it into place to help with reflux). He thinks this will help significantly with her sleep apnea. Until (and IF) these surgeries are done, there is nothing they will do right now for the apnea (except we're supposed to keep checking on her to make sure she's breathing!)
Finally, we also spoke with Lexi's neurologist at Cleveland Clinic. Lexi is actually on an upswing right now. She is babbling, getting on all 4's and rocking, and really starting to smile and interact. We are so hesitant to put her through another surgery right now and interrupt this improvement! The neurologist was to talk personally with the neurosurgeon at Cleveland Clinic today. In addition, he would like us to get a THIRD opinion at Rainbow Babies/University Hospital in Cleveland. We are hoping to hear back from the neurologist tomorrow.
We will keep everyone posted and are very anxious to make a final decision. We hate to constant back and forth on this decision. However, we know that Lexi will eventually have to have this brain surgery. The question will be- what's eventually? 2 weeks from now or 2 years from now? Unfortunately, this is not a decision ANY parent ever wants to make and we are facing a great deal of stress and uncertainty over the entire situation. Your prayers are greatly appreciated! For now, Lexi's brain surgery remains scheduled for May 12th- 21 days from now!
We went to Toledo- St V's hospital on Friday and met with a pediatric neurosurgeon. She spent almost an hour talking with us and looking over Lexi's MRI studies. This Dr. said that, based on Lexi's current "symptoms" (or lack thereof), that she would actually NOT operate right now. She would keep a very close eye on her, do repeat MRIs every 2-3 months and try to get her a little bigger. She also feels strongly (and says studies have shown) that Lexi should have the dura patch done as well as the bone removal. During the dura patch, the brain itself is actually opened which increases the chance of spinal fluid leaking out. This would mean a much more extensive hospital stay and MUCH more recovery time.
We then went to Cleveland Clinic on Monday to see the sleep neurologist. Lexi does have central sleep apnea- every so often,, her brain "forgets" to tell her body to breathe. They do feel it is fairly mild and that her chiari and severe reflux are the cause. The Dr would like us to have the chiari surgery and possibly a fundoplication surgery (where they actually wrap the stomach around the esophagus and sew it into place to help with reflux). He thinks this will help significantly with her sleep apnea. Until (and IF) these surgeries are done, there is nothing they will do right now for the apnea (except we're supposed to keep checking on her to make sure she's breathing!)
Finally, we also spoke with Lexi's neurologist at Cleveland Clinic. Lexi is actually on an upswing right now. She is babbling, getting on all 4's and rocking, and really starting to smile and interact. We are so hesitant to put her through another surgery right now and interrupt this improvement! The neurologist was to talk personally with the neurosurgeon at Cleveland Clinic today. In addition, he would like us to get a THIRD opinion at Rainbow Babies/University Hospital in Cleveland. We are hoping to hear back from the neurologist tomorrow.
We will keep everyone posted and are very anxious to make a final decision. We hate to constant back and forth on this decision. However, we know that Lexi will eventually have to have this brain surgery. The question will be- what's eventually? 2 weeks from now or 2 years from now? Unfortunately, this is not a decision ANY parent ever wants to make and we are facing a great deal of stress and uncertainty over the entire situation. Your prayers are greatly appreciated! For now, Lexi's brain surgery remains scheduled for May 12th- 21 days from now!
Wednesday, April 7, 2010
April 7-More opinions and more surgery
Lexi was released from the hospital on March 18th. She was in for 4 days total. She has been on breathing treatments 1-2 times a day since she has been home. We will continue these through the end of RSV season, which will be the end of April. The doctors also said that with her "compromised lungs" she will most likely need breathing treatments any time she even gets a cold for the next year! I didn't realize RSV and pneumonia can have such a lasting effect!
Since coming home from the hospital, Lexi has really taken off! She is babbling- she "says" dada, papa and few other things we can't make out. I'm still upset that she didn't say "Mama" first, but I'll forgive her:-) She also gets onto all fours AND goes from laying to sitting up all be herself!! We have been amazed! She also ate 5 TBSP of baby food in one setting this past weekend- that's HUGE for her!!
We went to Cleveland Clinic yesterday and saw the feeding clinic, speech and opthomology. The Feeding clinic would like us to try new foods with Lexi- not just veggies and fruit. This can become a bit complicated, however, since everything seems to have milk or eggs in it! In Opthomology, my suspicion was confirmed- Lexi's eyes are still not straight. They are definitely STRAIGHTER. She is also starting to favor her left eye because her right eye is still turned in. So we will now patch her left eye again for one-hour a day and then see optho after chiari surgery in June to schedule ANOTHER eye surgery (ugh!).
Finally, I have been reading a book called "Light Will Emerge" written by a woman who dealt with her children having chiari surgeries. From reading this book, we have decided to get one more outside opinion before we move forward with Lexi's brain surgery. We see a pediatric neurosurgeon at Toledo Children's hospital on April 16th. The author, Kaci King, also agreed to speak with me about her childs' experiences. She is calling me tomorrow evening. I'm really looking forward to talking to a parent who went through the exact same surgery when her little boy was 17 months!
Please continue to pray for patience for our family and that we can find time to work on all of Lexi's therapies- speech, OT, PT and feeding.
Please pray for our appointment on April 16th. We're asking for wisdom and guidance from this doctor!
We'll post more after Lexi's April 16th appointment!
Since coming home from the hospital, Lexi has really taken off! She is babbling- she "says" dada, papa and few other things we can't make out. I'm still upset that she didn't say "Mama" first, but I'll forgive her:-) She also gets onto all fours AND goes from laying to sitting up all be herself!! We have been amazed! She also ate 5 TBSP of baby food in one setting this past weekend- that's HUGE for her!!
We went to Cleveland Clinic yesterday and saw the feeding clinic, speech and opthomology. The Feeding clinic would like us to try new foods with Lexi- not just veggies and fruit. This can become a bit complicated, however, since everything seems to have milk or eggs in it! In Opthomology, my suspicion was confirmed- Lexi's eyes are still not straight. They are definitely STRAIGHTER. She is also starting to favor her left eye because her right eye is still turned in. So we will now patch her left eye again for one-hour a day and then see optho after chiari surgery in June to schedule ANOTHER eye surgery (ugh!).
Finally, I have been reading a book called "Light Will Emerge" written by a woman who dealt with her children having chiari surgeries. From reading this book, we have decided to get one more outside opinion before we move forward with Lexi's brain surgery. We see a pediatric neurosurgeon at Toledo Children's hospital on April 16th. The author, Kaci King, also agreed to speak with me about her childs' experiences. She is calling me tomorrow evening. I'm really looking forward to talking to a parent who went through the exact same surgery when her little boy was 17 months!
Please continue to pray for patience for our family and that we can find time to work on all of Lexi's therapies- speech, OT, PT and feeding.
Please pray for our appointment on April 16th. We're asking for wisdom and guidance from this doctor!
We'll post more after Lexi's April 16th appointment!
Wednesday, March 17, 2010
March 17th- Change of Plans1
We got a little bit of a surprise on Monday morning. I took Lexi to her therapy and realized she was sounding really wheezy. So we checked her pulse ox and it was in the low 90s. I called the hospital pedicatrician and they agreed to see her in the ER. After a series of testing, bloodwork and X-rays, it turns out poor Lexi Mae has pneumonia and RSV (a virus that attacks small children's respiratory system). With Lexi being a heart baby, this becomes a bigger deal. She is at Blanchard Valley Hospital on the ICU wing.
Today, she is just having a rough time "turning the corner" to feeling better. The pedaitric hospitlists said he's heard 80 year old women who have sounded better than Lexi. They are giving her treatments every 3 hours today to try to knock this out of her and also have her on steroids to help her lungs. Every time they try to take her off her oxygen, her pluse-ox drops into the 80s (it's supposed to be 100). Pleaase pray Lexi will show big improvements today!
As far as her brain surgery goes, we spoke with the cardiologist and neurosurgeon yesterday. They are post-poning her surgery until May 12th as she needs 2 months for her lungs to heal. We're actually thankful that they are post-poning the surgery because after this unexpected stay. I can't imagine turning around and being in the hospital for 10 days next week.
Please keep Lexi n your prayers. Please also pray for my family as they are once again juggling the twins around. Jon is working during the day and coming to the hospital in the evenings so I can run and see the twins for an hour or so before he comes back home and puts them to bed. We are hoping to come on by Friday, but it's completely up to Lexi!
Thank you for your prayers!
Today, she is just having a rough time "turning the corner" to feeling better. The pedaitric hospitlists said he's heard 80 year old women who have sounded better than Lexi. They are giving her treatments every 3 hours today to try to knock this out of her and also have her on steroids to help her lungs. Every time they try to take her off her oxygen, her pluse-ox drops into the 80s (it's supposed to be 100). Pleaase pray Lexi will show big improvements today!
As far as her brain surgery goes, we spoke with the cardiologist and neurosurgeon yesterday. They are post-poning her surgery until May 12th as she needs 2 months for her lungs to heal. We're actually thankful that they are post-poning the surgery because after this unexpected stay. I can't imagine turning around and being in the hospital for 10 days next week.
Please keep Lexi n your prayers. Please also pray for my family as they are once again juggling the twins around. Jon is working during the day and coming to the hospital in the evenings so I can run and see the twins for an hour or so before he comes back home and puts them to bed. We are hoping to come on by Friday, but it's completely up to Lexi!
Thank you for your prayers!
Saturday, March 13, 2010
Saturday, March 13th- Decision Made
After a lot of research, talking with many doctors and tons of praying, we have decided to move forward with brain surgery for Lexi. (Discussing it usually brings me to tears). We spoke with Lexi's neurologist and the neurosurgeon several times this past week, as well as her local hospital pediatrician and all 3 doctors feel it is best to move forward with Lexi having surgery. Lexi has some unexplained bouts of vomiting and fussiness, especially at night. She also has a significant chiari malformation (9-10mm) and the herniation is actually touching her first vertebra. The concern is, if we wait and do nothing, we may run into an emergency situation. With Lexi being a heart patient, she needs a special team, headed by a pediatric cardiac anesthesiologist, to do this surgery. Doing the surgery now ensures we won't run into any unplanned circumstances and that Lexi will receive the best and safest care possible.
Lexi's brain surgery is scheduled for Wednesday, March 24th. She will be the first patient of the day. The surgeon will remove about an inch of a block of bone at the base of her skull and, most likely, the first vertebra as well. If needed, they will also put a small mesh covering on her dura (covering of the brain) if removing the bone alone doesn't get rid of the pressure. She will be in surgery about 4 hours. The doctor is estimating her to be in ICU 3-4 days and in the hospital pediatric unit about 7-10 days.
Prayer Requests:
1. Pray for the team of doctors as they prepare for Lexi's surgery. Pray that the right people are put on her team so she will receive the best care possible. Lexi is "quite a bit younger" than most of the chiari patients that are operated on- and she is only 18 lbs. Please pray for steady hands for the neurosurgeon!
2. Pray for our fears of Lexi going through a second MAJOR surgery (and her 4th total surgery in 16 months). Her heart surgery was a nightmare and we are terrified for her. Please pray that everything goes according to plan! We would love to be home in time for Easter. Even if we can't be at church or with family, we would like to spend it at home with the twins!
3. Pray that we will be able to get a room at the Ronald McDonald House. I will be staying in the hospital room with Lexi, but Jon and my other family members that will be rotating help will need a place to stay. Otherwise, the cheapest hotel at Cleveland Clinic is at least $125 per night. Along with our meal expenses (the cafeteria is good but VERY expensive), this could become a very pricey 10 days. Unfortunately, the RMH at the Clinic goes on a first-come basis. We will not know if we have a room until after 2pm on the 23rd.
4. Finally, pray for the twins, Aleah and Elizabeth, as they will once again be gone from Mommy (and Daddy for part of the time). Jon will stay the 24th- 27th but has to return to work. They will also be bounced around quite a bit during the day while Jon works. Aleah is a mommy's girl and I think this is one of the more difficult parts of Lexi having another surgery- leaving my other 2 little ones again!
Lexi's brain surgery is scheduled for Wednesday, March 24th. She will be the first patient of the day. The surgeon will remove about an inch of a block of bone at the base of her skull and, most likely, the first vertebra as well. If needed, they will also put a small mesh covering on her dura (covering of the brain) if removing the bone alone doesn't get rid of the pressure. She will be in surgery about 4 hours. The doctor is estimating her to be in ICU 3-4 days and in the hospital pediatric unit about 7-10 days.
Prayer Requests:
1. Pray for the team of doctors as they prepare for Lexi's surgery. Pray that the right people are put on her team so she will receive the best care possible. Lexi is "quite a bit younger" than most of the chiari patients that are operated on- and she is only 18 lbs. Please pray for steady hands for the neurosurgeon!
2. Pray for our fears of Lexi going through a second MAJOR surgery (and her 4th total surgery in 16 months). Her heart surgery was a nightmare and we are terrified for her. Please pray that everything goes according to plan! We would love to be home in time for Easter. Even if we can't be at church or with family, we would like to spend it at home with the twins!
3. Pray that we will be able to get a room at the Ronald McDonald House. I will be staying in the hospital room with Lexi, but Jon and my other family members that will be rotating help will need a place to stay. Otherwise, the cheapest hotel at Cleveland Clinic is at least $125 per night. Along with our meal expenses (the cafeteria is good but VERY expensive), this could become a very pricey 10 days. Unfortunately, the RMH at the Clinic goes on a first-come basis. We will not know if we have a room until after 2pm on the 23rd.
4. Finally, pray for the twins, Aleah and Elizabeth, as they will once again be gone from Mommy (and Daddy for part of the time). Jon will stay the 24th- 27th but has to return to work. They will also be bounced around quite a bit during the day while Jon works. Aleah is a mommy's girl and I think this is one of the more difficult parts of Lexi having another surgery- leaving my other 2 little ones again!
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