We made a trip down to Columbus this week for an appointment with the pediatric opthomologist. Since Lexi has severe facial nerve damage, she does not always close her eyes all the way when she is asleep. Because of this, her right eye (the same one that had the abrasion) is becoming a little "hazy." We are going to increase the frequency of her moisturizing eye drops and the opthomologist has moved her appointments up to once a month. The good news is that her corneal abrasion healed well!
We were also able to speak with the Cleveland Clinic neurologist again. They are not sure if Lexi only has facial nerve damage, which is cranial nerve seven, or if there are other cranial nerves affected. Nerves 5, 9, and 10-12 are not able to be directly tested. We have been asked to keep an eye on Lexi's "symptoms" and ask the therapists to do the same. The best way to "test" for these other nerves is simply by observation.
We have appreciate so many of you asking how Jon and I are doing. We have been so consumed with Lexi's situation, we have had little time to actually focus on being married! Thank God for our firm marriage to get us through these difficult times! We were able to get away for a little bit this weekend, which was probably the best Valentine gift!
Specific Prayer Requests:
Alexis is definitely making some progress! She sat in her bouncy seat for 20 minutes today while we got ready for church! Pray for continued progress in her "moods."
Lexi also has a swallow study scheduled for March 9th. The speech therapist is concerned that she does not have a coordinated swallow. Pray for us as we work to prepare Lexi for this test so that she is successful at it! The first swallow study did not go well at all! Pray that Lexi makes huge advances in her feeds the next few weeks!
Finally, pray for Jon and I as we work to get Lexi on some sort of a schedule. She sleeps a great deal of the day. She is typically awake for only 2-3 hours the entire day! We need to work on a schedule for her to be sure she is getting time for therapies!
We have a few doctors appointments again this week so we will update next weekend!
Sunday, February 15, 2009
Monday, February 9, 2009
Monday, February 9
We had a very busy weekend but wanted to be sure to once again update everyone on Alexis.
Lexi seems to be making some improvements! Every once in a while, she slowly closes her eyes as if to do a slow blink. She also has spent some time in her bouncy seat or floor gym without crying! She has been able to do this for about 10 minutes! While this seems like such a short time to most, it is a HUGE improvement for us! Lexi is also sleeping about 5 hours in her bassinet at night! We are hoping to move her into crib with her new sleep monitor this week.
In regards to feeding, Lexi is taking about 10 mls during 3 day time feedings. We are hoping she will be able to gradually increase this amount, but without facial nerve feeling, this will take some time.
She was able to get her RSV shot on Thursday but this has now led to an inner ear infection. She is pretty upset about her ear when she is awake so please pray that this mends quickly!
Finally, Parkview Church recognized Alexis on Sunday and presented her with the check from her benefit. They gave us one of the HUGE "sign" checks! It was really exciting. With much thanks to MANY, MANY people, the church raised $7,004 for Alexis' medical expenses!
We are so thankful for so many people that have supported our family both financially and through prayer. Please continue to keep us in your prayers. The reality of the situation has set in and both Jon and I are completely exhausted. Blanchard Valley School begins their services this week. While we are excited to get Lexi some additional therapy, adding even more to our schedule is a bit overwhelming. Please pray for strength and patience.
In addition, I am starting my private lessons back up, trying to do more Tastefully Simple parties and returning as the Director of Children of the Light. This is due to the fact that we found out this week that we will most likely not qualify for full funding with BCMH (Bureau for Children with Medical Handicaps). We were hoping that BCMH would be able to pick up some of the expenses the insurance company is not. But, with the help of my "side jobs" and the HUGE benefit check, we are hopeful that we can make ends meet! However, please pray for us as we budget and I try to find the time and energy to sneak in these extra things!
Please also pray for the twins as they are in such a difficult stage. This has been quite an adjustment for them as well and Jon and I hope to be able to start taking some time to spend with JUST the twins.
We will continue to update this blog weekly and pray that some day, we can report that both Lexi's heart condition and facial nerve damage has been healed!
Lexi seems to be making some improvements! Every once in a while, she slowly closes her eyes as if to do a slow blink. She also has spent some time in her bouncy seat or floor gym without crying! She has been able to do this for about 10 minutes! While this seems like such a short time to most, it is a HUGE improvement for us! Lexi is also sleeping about 5 hours in her bassinet at night! We are hoping to move her into crib with her new sleep monitor this week.
In regards to feeding, Lexi is taking about 10 mls during 3 day time feedings. We are hoping she will be able to gradually increase this amount, but without facial nerve feeling, this will take some time.
She was able to get her RSV shot on Thursday but this has now led to an inner ear infection. She is pretty upset about her ear when she is awake so please pray that this mends quickly!
Finally, Parkview Church recognized Alexis on Sunday and presented her with the check from her benefit. They gave us one of the HUGE "sign" checks! It was really exciting. With much thanks to MANY, MANY people, the church raised $7,004 for Alexis' medical expenses!
We are so thankful for so many people that have supported our family both financially and through prayer. Please continue to keep us in your prayers. The reality of the situation has set in and both Jon and I are completely exhausted. Blanchard Valley School begins their services this week. While we are excited to get Lexi some additional therapy, adding even more to our schedule is a bit overwhelming. Please pray for strength and patience.
In addition, I am starting my private lessons back up, trying to do more Tastefully Simple parties and returning as the Director of Children of the Light. This is due to the fact that we found out this week that we will most likely not qualify for full funding with BCMH (Bureau for Children with Medical Handicaps). We were hoping that BCMH would be able to pick up some of the expenses the insurance company is not. But, with the help of my "side jobs" and the HUGE benefit check, we are hopeful that we can make ends meet! However, please pray for us as we budget and I try to find the time and energy to sneak in these extra things!
Please also pray for the twins as they are in such a difficult stage. This has been quite an adjustment for them as well and Jon and I hope to be able to start taking some time to spend with JUST the twins.
We will continue to update this blog weekly and pray that some day, we can report that both Lexi's heart condition and facial nerve damage has been healed!
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