I apologize that it has been so many days since we last blogged. Things have been extremely busy for us the past 2 weeks. But, I know many of you have been asking how Lexi's swallow study went last week and appreciate all the prayers and questions!
We went to Cleveland for Lexi's swallow study on April 15th. Cleveland, once again, did a fantastic job. They actually let me feed her during the study since I am most familiar with Lexi and what she prefers. Unfortunately, Lexi aspirated 2 of 25 times on thin liquids. While infants aspirating isn't all that uncommon, Lexi did 2 silent aspirations, which means she did not cough or show any signs of distress. She doesn't feel the liquid going into her lungs. This is obviously very dangerous and discouraging. HOWEVER, Cleveland did a very thorough job. They then allowed me to give her nectar-thick formula via bottle and she did great! We then went to applesauce and then back to necart-thick formula. Lexi didn't aspirate on any of these! Over all, she did 50 swallows of nectar-thick and passed! Yeah! This means we will be able to resume oral feeds with some thicker substances. There is actually a gel pack out there that you add to formula and it makes it just the right consistency. We will begin this process next week with the speech therapist.
We were also able to see GI last week again and Lexi seems to be doing well on her new medication. The doctor also changed out her mic-key to a shorter one. We will be going back to Cleveland in 3-4 weeks.
Lexi had a cardiology appointment today with a doctor from Toledo and everything looks pretty good! She will have an echo-cardiogram again next week which will give us a lot more information as to how her 2 narrowings are doing.
Finally, Lexi has been working very hard on her therapies. She is developing torticollis, which is a tightening of the neck muscles. Lexi keeps her head tilted to the right (almost as if always touching her right ear to her right shoulder). We didn't think a tight neck was too big of a deal, but the Physical therapist said that, if not corrected, it can actually cause facial deformities in infants. Having more weight on one side of the head due to the tilt causes infant's heads to become mis-shaped and eventually, deformed. So, needless to say, we are hitting Physical therapy very hard as Lexi has enough strikes against her! We are working with insurance to purchase 2 different therapy forms for our house- a wedge for her to sleep on at night to help with reflux and a chair to help her sit more upright during feeds. Unforunately, insurance companies make everything very lengthy and drawn out! A simple request takes tons of papers and weeks to get approved!
Prayer requests:
Pray for Lexi as she begins to work on feeding again. Pray that we have much success this next week!
Pray for Lexi's Physical therapy sessions and that this torticollis will get fixed very soon!
Pray for me as I work with the insurance companies to get her feeding gel and both therapy forms covered so we do not have to pay for them out of pocket. (The wedge is $400 and the chair set is almost $1000!)
We hope you are all enjoying the spring weather! Thank you for your continued help and support!
Friday, April 24, 2009
Saturday, April 11, 2009
Saturday, April 11
Happy Easter! We are so excited to celebrate this joyous holiday with our three little ones at home! Lexi got her picture with the Easter bunny today and was able to watch the twins go on their first Easter egg hunt. Many of you have asked how her appointments at Cleveland Clinic went on Wednesday so I wanted to be sure and update everyone!
Wednesday was a very long, but productive day. We were able to see 4 new doctors and get blood work done all in 1 day! We left the house at 6:30am and returned at 8:30pm. We saw G.I. (gastroenterology) first. The doctor was very knowledgeable and gave us some helpful information. She scheduled Lexi for a new swallow study next Wednesday. Cleveland would like their own study done and we are very excited! We are asking everyone to PLEASE pray that Lexi does not aspirate on her next swallow study! The GI doctor also said that Lexi's mic-key tube is too large for her little tummy. This could be part of the reason for her crying and discomfort during her feeds. At her next appointment immediately after her swallow study, the doctor will most likely replace her tube with a smaller one. She also said there is absolutely no reason we should be paying $200 a month (not covered by any insurance) for Lexi's reflux medication. She gave us a script for a new medicine that will only cost $45 a month!
After GI and lunch, we then saw Endocrinology. Lexi has an under active thyroid. We weren't very concerned about this, but the doctor said it can actually lead to poor brain development. An under active thyroid in kids under age 3 is actually a very big deal. We're so glad we got her appointment moved up from July! The doctor did some blood work and put her on some thyroid medication (yeah-one more!)
After Endocrinology, it was on to Opthomology. Instead of a 3 hour appointment, we were only there for about an hour and were able to see 3 eye doctors during that time! They gave Lexi a very thorough check and said her vision looks good. We need to continue her eye drops but they do not need to see her back for 6 months!
Our last appointment was with ENT (ear, nose and throat). The doctor talked with us for quite some time. They are a little concerned about Lexi's raspy voice and the amount of time she spent on the ventilator. So, they put a tiny camera down Lexi's nose and into her throat. We were able to look at her vocal cords on a monitor! Lexi might have a nodule on her vocal cords and they look very red and swollen. This could be due to her reflux. However, at this point, there is nothing they will do for the nodule as operating on vocal cords is very risky. They will see Lexi back in 1 month.
Overall, we had a very productive day and Lexi did a fantastic job with all the poking and prodding! Are biggest prayer request at this point is for her swallow study at 9am next Wednesday, April 15th. PLEASE pray that Lexi does not aspirate during this study. If she does well with the test, we will be able to actively pursue bottle feeds again!
We will hopefully post again next week to update you all on her swallow study! Until then, have a blessed Easter! He is Risen!
Wednesday was a very long, but productive day. We were able to see 4 new doctors and get blood work done all in 1 day! We left the house at 6:30am and returned at 8:30pm. We saw G.I. (gastroenterology) first. The doctor was very knowledgeable and gave us some helpful information. She scheduled Lexi for a new swallow study next Wednesday. Cleveland would like their own study done and we are very excited! We are asking everyone to PLEASE pray that Lexi does not aspirate on her next swallow study! The GI doctor also said that Lexi's mic-key tube is too large for her little tummy. This could be part of the reason for her crying and discomfort during her feeds. At her next appointment immediately after her swallow study, the doctor will most likely replace her tube with a smaller one. She also said there is absolutely no reason we should be paying $200 a month (not covered by any insurance) for Lexi's reflux medication. She gave us a script for a new medicine that will only cost $45 a month!
After GI and lunch, we then saw Endocrinology. Lexi has an under active thyroid. We weren't very concerned about this, but the doctor said it can actually lead to poor brain development. An under active thyroid in kids under age 3 is actually a very big deal. We're so glad we got her appointment moved up from July! The doctor did some blood work and put her on some thyroid medication (yeah-one more!)
After Endocrinology, it was on to Opthomology. Instead of a 3 hour appointment, we were only there for about an hour and were able to see 3 eye doctors during that time! They gave Lexi a very thorough check and said her vision looks good. We need to continue her eye drops but they do not need to see her back for 6 months!
Our last appointment was with ENT (ear, nose and throat). The doctor talked with us for quite some time. They are a little concerned about Lexi's raspy voice and the amount of time she spent on the ventilator. So, they put a tiny camera down Lexi's nose and into her throat. We were able to look at her vocal cords on a monitor! Lexi might have a nodule on her vocal cords and they look very red and swollen. This could be due to her reflux. However, at this point, there is nothing they will do for the nodule as operating on vocal cords is very risky. They will see Lexi back in 1 month.
Overall, we had a very productive day and Lexi did a fantastic job with all the poking and prodding! Are biggest prayer request at this point is for her swallow study at 9am next Wednesday, April 15th. PLEASE pray that Lexi does not aspirate during this study. If she does well with the test, we will be able to actively pursue bottle feeds again!
We will hopefully post again next week to update you all on her swallow study! Until then, have a blessed Easter! He is Risen!
Saturday, April 4, 2009
Saturday, April 4th
Here is our update on Lexi for the first week of April:
We have had a slow week with Alexis. It seems that we have reached a plateau with her and her therapies. This is to be expected with anyone in therapy, but it is difficult to be patient and see such slow progress. The physical therapist wasn't able to come this week, but Lexi is still not able to hold her head up all the time. We are working with her as often as we can, but the weeks spent in the hospital have put her very behind- holding her head up, however, is the basis of additional milestones- sitting up, pushing up, crawling etc.
The speech therapist was able to look at her swallow study. The good news is that she was not able to see any aspiration, which means it is a micro-aspiration and was very small. However, Lexi is unfortunately doing silent aspiration, which means she is not showing us any signs of distress when she aspirates. The therapists are very reluctant to allow Lexi to take anything by mouth because of this. Again, this is very frustrating! While we have been assured that Lexi not being able to eat by mouth is not permanent, it is the one way we are able to really measure her progress.
Lexi is doing a little better with her new mic-key button but still cries during her feeds. On Tuesday of this week, her pump stopped working so I was very panicked! Thankfully, the health company was able to send a company down from Toledo to deliver us new pump and the NICU doctors at BVH were helpful in talking me through a syringe feed. We saw the Neonatologist on Thursday for Lexi's 5 month check-up and she is a whopping 12lbs 8 oz and 24 inches long! She is in the 5% range though so we'll take it!
Finally, we are going to see 4 doctors next Wednesday at Cleveland Clinic. We have been extremely happy with every aspect of the hospital! The endocrinologist was not available until July, but he agreed to add Lexi to his case load this Wednesday! So, we will begin with GI at 9am, followed by Endocrinology, Opthomology and finally ENT (ear, nose and throat) at 3:30pm. Lexi has some issues with her esophagus and also has a very raspy voice. The speech therapist is concerned she may have nodes on her vocal chords or there may have been some damage from being on the ventilator. We are VERY excited to see all these new doctors and get a new perspective on Lexi's care. We are also thankful that the scheduling department was able to get all 4 appointments on the same day.
Prayer requests:
Please pray for Lexi's therapies. Pray that she makes huge strides in the next few weeks so we can be encouraged! Pray that Jon and I find time to work with Lexi as often as possible!
Pray for Lexi's swallowing. She has pooling in her throat in 2 different spots and this is concerning. Pray the ENT or GI doctors are able to give her some help with swallowing!
Pray for Lexi's appointments on Wednesday. It is going to be a very long day, especially for Lexi, as we will leave at 6:30am and return around 7-8pm that evening. Pray for traveling for me, my dad and Lexi and patience for little Lexi as she will be poked and prodded a lot!
Finally, we have taken several new pictures of Lexi the past few months so I hope to get them posted sometime next week! I'll post it when we do!
We have had a slow week with Alexis. It seems that we have reached a plateau with her and her therapies. This is to be expected with anyone in therapy, but it is difficult to be patient and see such slow progress. The physical therapist wasn't able to come this week, but Lexi is still not able to hold her head up all the time. We are working with her as often as we can, but the weeks spent in the hospital have put her very behind- holding her head up, however, is the basis of additional milestones- sitting up, pushing up, crawling etc.
The speech therapist was able to look at her swallow study. The good news is that she was not able to see any aspiration, which means it is a micro-aspiration and was very small. However, Lexi is unfortunately doing silent aspiration, which means she is not showing us any signs of distress when she aspirates. The therapists are very reluctant to allow Lexi to take anything by mouth because of this. Again, this is very frustrating! While we have been assured that Lexi not being able to eat by mouth is not permanent, it is the one way we are able to really measure her progress.
Lexi is doing a little better with her new mic-key button but still cries during her feeds. On Tuesday of this week, her pump stopped working so I was very panicked! Thankfully, the health company was able to send a company down from Toledo to deliver us new pump and the NICU doctors at BVH were helpful in talking me through a syringe feed. We saw the Neonatologist on Thursday for Lexi's 5 month check-up and she is a whopping 12lbs 8 oz and 24 inches long! She is in the 5% range though so we'll take it!
Finally, we are going to see 4 doctors next Wednesday at Cleveland Clinic. We have been extremely happy with every aspect of the hospital! The endocrinologist was not available until July, but he agreed to add Lexi to his case load this Wednesday! So, we will begin with GI at 9am, followed by Endocrinology, Opthomology and finally ENT (ear, nose and throat) at 3:30pm. Lexi has some issues with her esophagus and also has a very raspy voice. The speech therapist is concerned she may have nodes on her vocal chords or there may have been some damage from being on the ventilator. We are VERY excited to see all these new doctors and get a new perspective on Lexi's care. We are also thankful that the scheduling department was able to get all 4 appointments on the same day.
Prayer requests:
Please pray for Lexi's therapies. Pray that she makes huge strides in the next few weeks so we can be encouraged! Pray that Jon and I find time to work with Lexi as often as possible!
Pray for Lexi's swallowing. She has pooling in her throat in 2 different spots and this is concerning. Pray the ENT or GI doctors are able to give her some help with swallowing!
Pray for Lexi's appointments on Wednesday. It is going to be a very long day, especially for Lexi, as we will leave at 6:30am and return around 7-8pm that evening. Pray for traveling for me, my dad and Lexi and patience for little Lexi as she will be poked and prodded a lot!
Finally, we have taken several new pictures of Lexi the past few months so I hope to get them posted sometime next week! I'll post it when we do!
Thursday, March 26, 2009
Thursday, March 26th
Lexi had her G-tube procedure today. We arrived at Nationwide around 10:30. The nurses put numbing cream on her tube site for an hour, hooked her up to monitors and then gave her sedation medication. The doctor then did her mic-key procedure. They replaced her long PEG tube with a shorter tube. Lexi did well and only had some minor bleeding from the procedure. We had to learn how take care of the new tube and how to replace it as-needed, or every 3 months. We're not sure we are comfortable removing the tube and inserting a new one into her stomach! We are hoping we can either have our home-health nurse or a doctor do this! After a trip to X-ray to check the placement of the tube, Lexi was able to go home (around 2:30pm). She is extremely fussy tonight and her tube site is very red and irritated. We are hoping to have her back to "normal" in a few days.
We have all of Lexi's doctors moved over to Cleveland Clinic except 2- endocrinology and cardiology. The pediatric endocrinologist isn't available in Cleveland until July. We are also trying to find a cardiologist that is best for Lexi.
Lexi's therapies are going well. Her swallow study shows that she is silently aspirating, which means she is showing no signs when liquid enters her lungs. This is obviously very discouraging and dangerous for Lexi so we are not giving her any more liquids by mouth. We are, however, trying some cereal and Lexi is taking 10-15 bites. She is also starting to grab for toys, which is very encouraging!
Please pray for:
Lexi as she recovers from her procedure and for Jon and I as we adjust to the new tubes and caring for it.
Easy transitions to Cleveland as our 1st 2 appointments are there on April 8th.
Lexi's feeds. Pray that she begins to develop some coordination with her tongue.
It's hard to believe that the twins turned 18 months today and Lexi will be 5 months on Saturday! She just hit 12 pounds but she is growing!
We have all of Lexi's doctors moved over to Cleveland Clinic except 2- endocrinology and cardiology. The pediatric endocrinologist isn't available in Cleveland until July. We are also trying to find a cardiologist that is best for Lexi.
Lexi's therapies are going well. Her swallow study shows that she is silently aspirating, which means she is showing no signs when liquid enters her lungs. This is obviously very discouraging and dangerous for Lexi so we are not giving her any more liquids by mouth. We are, however, trying some cereal and Lexi is taking 10-15 bites. She is also starting to grab for toys, which is very encouraging!
Please pray for:
Lexi as she recovers from her procedure and for Jon and I as we adjust to the new tubes and caring for it.
Easy transitions to Cleveland as our 1st 2 appointments are there on April 8th.
Lexi's feeds. Pray that she begins to develop some coordination with her tongue.
It's hard to believe that the twins turned 18 months today and Lexi will be 5 months on Saturday! She just hit 12 pounds but she is growing!
Tuesday, March 17, 2009
Tuesday, March 17th
Happy St. Patrick's Day! I was just at a Mother's of Multiples meeting and was slightly scolded (and reminded) that I have not updated the blog. We do appreciate those of you that check this regularly as we still have a long, up-hill road to climb with Lexi.
We went down to Nationwide on Friday for Lexi's swallow study. We were anxious to find out how she is doing as we have seen some major improvements in her feeds! The swallow study did not go as we had planned. Lexi started off very well, but about 6-7 minutes into the study, she aspirated. This means she swallowed liquid into her lungs instead of down her esophagus. The danger in this is that developing fluid on the lungs can lead to pneumonia. We were extremely disappointed as we were not anticipating this! We have been instructed to stop all bottle feeds with her. They did try honey-thick cereal by a spoon and she seemed to manage this ok. So, we will most likely begin giving her a very small amount of cereal for "therapeutic feeds." We are hoping to do another swallow study in the near future and are praying that for some reason this aspiration was a fluke. It is very frustrating to see Lexi make so much progress (she was up to amost an ounce!) and then to have it taken away.
We also had a visit with the opthomologist (after a 3 hour wait!!). Fortunately, we received much better news at this appointment. Lexi's vision is within the normal range for babies her age! She still has some hazing on her right eye and we need to continue to keep eye drops and ointment on her eyes for her reduced blink reflex. But, we were relieved that there are no current issues with her eye sight!
Finally, after another extremely long day at the hospital, we have decided to transfer all of Lexi's care to Cleveland Clinic. This is a very taxing process as we see 9 doctors! We are in the process of trying to find Dr's that will be covered by our insurance and have openings in the near future. Both of these task are becoming rather difficult and finding the time to make many phone calls is difficult. However, we feel it is in Lexi's best interest to have all of her care at the same hospital and the level of care at Cleveland Clinic has been fantastic!
Prayer Requests:
Please pray for Lexi's feeds. We meet with the speech therapist later this week to discuss our new game plan. Pray for our frustration level at having to stop her bottle feeds.
Pray for me, Cherie, as I work to get Lexi's care transferred. Pray that we are led to the right doctors at Cleveland Clinic that will give Lexi the best care possible and be knowledgeable about her condition. Pray for wisdom for these doctors.
Lexi has been extremely fussy lately. We are not sure what is wrong but she definitely appears to be in pain. Pray that the doctors will be able to find the right medicines to keep her happy.
Lexi has her mickey button procedure next Thursday, March 26th so we will keep you posted! She will be going under sedation for this and this obviously frightens us! Pray for peace as we prepare for this procedure.
Finally, the best news of all is-Lexi rolled over this week! Seven times!! We are very excited that she is making some progress! Praise God for these "baby steps" that give us hope when we need it most!
We went down to Nationwide on Friday for Lexi's swallow study. We were anxious to find out how she is doing as we have seen some major improvements in her feeds! The swallow study did not go as we had planned. Lexi started off very well, but about 6-7 minutes into the study, she aspirated. This means she swallowed liquid into her lungs instead of down her esophagus. The danger in this is that developing fluid on the lungs can lead to pneumonia. We were extremely disappointed as we were not anticipating this! We have been instructed to stop all bottle feeds with her. They did try honey-thick cereal by a spoon and she seemed to manage this ok. So, we will most likely begin giving her a very small amount of cereal for "therapeutic feeds." We are hoping to do another swallow study in the near future and are praying that for some reason this aspiration was a fluke. It is very frustrating to see Lexi make so much progress (she was up to amost an ounce!) and then to have it taken away.
We also had a visit with the opthomologist (after a 3 hour wait!!). Fortunately, we received much better news at this appointment. Lexi's vision is within the normal range for babies her age! She still has some hazing on her right eye and we need to continue to keep eye drops and ointment on her eyes for her reduced blink reflex. But, we were relieved that there are no current issues with her eye sight!
Finally, after another extremely long day at the hospital, we have decided to transfer all of Lexi's care to Cleveland Clinic. This is a very taxing process as we see 9 doctors! We are in the process of trying to find Dr's that will be covered by our insurance and have openings in the near future. Both of these task are becoming rather difficult and finding the time to make many phone calls is difficult. However, we feel it is in Lexi's best interest to have all of her care at the same hospital and the level of care at Cleveland Clinic has been fantastic!
Prayer Requests:
Please pray for Lexi's feeds. We meet with the speech therapist later this week to discuss our new game plan. Pray for our frustration level at having to stop her bottle feeds.
Pray for me, Cherie, as I work to get Lexi's care transferred. Pray that we are led to the right doctors at Cleveland Clinic that will give Lexi the best care possible and be knowledgeable about her condition. Pray for wisdom for these doctors.
Lexi has been extremely fussy lately. We are not sure what is wrong but she definitely appears to be in pain. Pray that the doctors will be able to find the right medicines to keep her happy.
Lexi has her mickey button procedure next Thursday, March 26th so we will keep you posted! She will be going under sedation for this and this obviously frightens us! Pray for peace as we prepare for this procedure.
Finally, the best news of all is-Lexi rolled over this week! Seven times!! We are very excited that she is making some progress! Praise God for these "baby steps" that give us hope when we need it most!
Thursday, March 5, 2009
Thursday, March 5
Several people have asked how Lexi's Cleveland Clinic appointment went so we thought we'd go ahead and blog again this week.
First, Lexi slept the entire way to Cleveland! This was a big improvement! She screamed the entire way home but at least we got some peace one way!
The neurologist did a lengthy exam with Lexi. The good news is that he has ruled out everything possible as far as a disease, etc that might be causing this cranial/facial nerve damage. He feels Lexi's current issues are related to her heart surgery. This is good news as this means 2 things- 1- it is hopeful that it will get better and 2- it is not going to get worse!
We feel Lexi has made huge improvements. Dr. Friedman feels she has made "some improvements" but has a long way to go to have normal facial function. He is estimating another 6-12 months minimum. He also said that many people as their nerves are regenerating tend to develop some "tics." He said the nerves sometimes don't connect quite right again. For example, some people will yawn and their eyes will blink rapidly. We hope this does not happen to Lexi as she begins to heal. The Dr. would like to see her back in 3 months and will most likely do another EMG on her at that point.
Please pray for Lexi's continued healing. This is going to be a longer road to recovery than we were hoping for. Pray for patience and encouraging moments for Jon and I.
Lexi has to be taught every simple thing- even things as basic as grasping a toy. Pray that we are able to balance our time working with Lexi and spending time with the twins (and that we might even be able to find some time for us!)
Thank you to everyone who asks us how Lexi is doing. Is is a huge encouragement to us to know that even though this is going to be a very long road, we have many people still interested AND praying for little Lexi!
First, Lexi slept the entire way to Cleveland! This was a big improvement! She screamed the entire way home but at least we got some peace one way!
The neurologist did a lengthy exam with Lexi. The good news is that he has ruled out everything possible as far as a disease, etc that might be causing this cranial/facial nerve damage. He feels Lexi's current issues are related to her heart surgery. This is good news as this means 2 things- 1- it is hopeful that it will get better and 2- it is not going to get worse!
We feel Lexi has made huge improvements. Dr. Friedman feels she has made "some improvements" but has a long way to go to have normal facial function. He is estimating another 6-12 months minimum. He also said that many people as their nerves are regenerating tend to develop some "tics." He said the nerves sometimes don't connect quite right again. For example, some people will yawn and their eyes will blink rapidly. We hope this does not happen to Lexi as she begins to heal. The Dr. would like to see her back in 3 months and will most likely do another EMG on her at that point.
Please pray for Lexi's continued healing. This is going to be a longer road to recovery than we were hoping for. Pray for patience and encouraging moments for Jon and I.
Lexi has to be taught every simple thing- even things as basic as grasping a toy. Pray that we are able to balance our time working with Lexi and spending time with the twins (and that we might even be able to find some time for us!)
Thank you to everyone who asks us how Lexi is doing. Is is a huge encouragement to us to know that even though this is going to be a very long road, we have many people still interested AND praying for little Lexi!
Sunday, March 1, 2009
Sunday, March 1
It's hard to believe that it's March! Lexi turned 4 months old yesterday and the twins were 17-months on Thursday!
Now that we have been home and are settling into more of a routine, we are definitely seeing some improvements with Lexi. A new set of therapists also started working with her from Blancherd Valley Schools and they are fantastic! The speech therapists definitely think Lexi's suck and swallow have returned. Now it is a matter of getting her to re-learn the suck-breathe-swallow pattern and then develop endurance. Lexi is also finally starting to hold her head up a little better. We have been a little frustrated at how long it is taking her to do some basic baby things. However, one of the therapist said that when they calculate development, for every week a child spebnds in the hospital, it takes them 3 weeks to catch up. This would put Lexi 18 weeks behind. She is going to need a lot of therapy and a lot of prayers to get caught up!
At Lexi's most recent neonatalist appointment, she is finally on the growth chart for weight! She is 10 lbs 9 oz and in the 5th percentile. We aren't quite there for height but we'll take it!
Finally, the neurologist from Cleveland Clinic called on Friday and has moved Lexi's appointment to this Tuesday! Jon and I will be heading to Cleveland early Tuesday afternoon. These are very lengthy in-depth appointments but we are very excited to see what the neurologist has to say since he has not seen Lexi for almost 2 months!
Prayer Requests: We are thankful for Lexi's progress with eating as she takes about 10 mls on a regular basis for each feeding. Please pray she continues to work on her eating pattern and develop endurance. Pray for our appointment at Cleveland Clinic. We are very anxious about the appointment. Also pray that Lexi does well in her car seat. She typically screams the entire trip. Pray that her new therapies work well!
Now that we have been home and are settling into more of a routine, we are definitely seeing some improvements with Lexi. A new set of therapists also started working with her from Blancherd Valley Schools and they are fantastic! The speech therapists definitely think Lexi's suck and swallow have returned. Now it is a matter of getting her to re-learn the suck-breathe-swallow pattern and then develop endurance. Lexi is also finally starting to hold her head up a little better. We have been a little frustrated at how long it is taking her to do some basic baby things. However, one of the therapist said that when they calculate development, for every week a child spebnds in the hospital, it takes them 3 weeks to catch up. This would put Lexi 18 weeks behind. She is going to need a lot of therapy and a lot of prayers to get caught up!
At Lexi's most recent neonatalist appointment, she is finally on the growth chart for weight! She is 10 lbs 9 oz and in the 5th percentile. We aren't quite there for height but we'll take it!
Finally, the neurologist from Cleveland Clinic called on Friday and has moved Lexi's appointment to this Tuesday! Jon and I will be heading to Cleveland early Tuesday afternoon. These are very lengthy in-depth appointments but we are very excited to see what the neurologist has to say since he has not seen Lexi for almost 2 months!
Prayer Requests: We are thankful for Lexi's progress with eating as she takes about 10 mls on a regular basis for each feeding. Please pray she continues to work on her eating pattern and develop endurance. Pray for our appointment at Cleveland Clinic. We are very anxious about the appointment. Also pray that Lexi does well in her car seat. She typically screams the entire trip. Pray that her new therapies work well!
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