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!
Saturday, January 31, 2009
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!
Subscribe to:
Posts (Atom)
