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!
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