Wow! What a crazy past month it has been! Lexi has made so many improvements over the past few weeks. She is now crawling, pulling to stand and walking while holding our hands. She's even able to stand on her own for a few seconds. She is so proud of herself!! Here is the latest- it has been an eventful week!
This week, we took Lexi to Cleveland Clinic for a swallow study and feeding clinic appointment. We were hoping for great results since Lexi has been doing well with her eating. Lexi can sometimes eat up to 8 oz of baby food AND she is drinking from a straw!! She loses half of it out her mouth since she isn't able to make great lip closer- BUT she's doing it! Unfortunately, we were VERY disappointed to see that she is still aspirating on thin liquids. So, it's back to another round of vital stim (where they put little electrodes on her face for an hour and "shock it"). The biggest blessing, however, is that a family friend, who is speech therapist, does vital stim. So, instead of driving clear over to Fostoria, she has offered to come to our house!! What a HUGE answer to prayer! While I am not looking forward to adding THREE additional appointments a week to our already too-full schedule, I'm thankful Diane is willing to help us so much!
On Thursday, we took Lexi down to Columbus Childrens to a developmental toy library. An OT spent an hour with us looking through a variety of toys and trying to find adaptive toys that Lexi will be able to use. Lexi lacks a great deal of coordination AND motivation. We are trying to find toys that will motivate her to crawl (and some day WALK) over to them. We have a great list started for her 2-year old Birthday and Christmas!
Another update is that last week we took Lexi to Cleveland for an audiology test. Due to her lack of speech, they wanted to do a thorough exam of her hearing. Unfortunately, Lexi did not do very well with the testing. However, the doctors were unable to determine whether Lexi has a hearing issue or simply didn't feel like participating! So, we are really focusing on "hearing" exercises during speech therapy and will try again in 3 months.
Finally, today we had quite a scare! I went in to get Lexi out of bed this morning and her mic-key button was laying in her bed! There was formula everywhere! Her button does come out from time to time so I thought I'd just pop it back in. I couldn't get it in. I called Jon home from work- he couldn't get it in. After a call to Cleveland Clinic, we determined it must have come out early in the night and was now closing shut. Fortunately, the pediatric hospitalist at Blanchard Valley was able to re-open it - after a VERY traumatic experience! They had to give her shots right into her belly and then re-open the closed hole with surgical scissors. I must admit, I am pretty tough, but I had a major melt-down in the ER. As a parent, it is so difficult to see your sweet little one go through such traumatic situations! Lexi is doing well now though and we are thankful we didn't have to make an emergency trip to Cleveland again this week.
We are fortunate to have a week off next week to celebrate the twin's 3rd Birthday and then we head back on October 5th for 2 very important appointments. We will see Opthomology to discuss possible eye surgery again and we will also see Neurology to discuss how her chiari malformation is going and whether or not she will need surgery this next year.
Prayer requests:
We have a huge answer to prayer that we can get vital stim in our home. But, PLEASE pray for our family as we add additional appointments. We typically go to Cleveland Clinic once a week and then we will have: Vital stim treatments and Blanchard Valley Therapists on Mondays, OT/PT at the hospital on Tuesdays, Vital Stim on Wednesdays, Speech at the hospital on Thursdays and vital stim on Fridays. PLUS usually 1 local doctors appointment a week to check weight, mic-key button, etc. I'm exhausted and am trying to find a way to add more hours into my day to work 4 side jobs (helping my dad at his office 1 day a week, piano lessons for 6 students, Tastefully Simple and Children of the Light), manage a household, run Lexi to appointments and try to be a mommy to the twins. Please pray for strength and energy!
Pray for GOOD results at our 2 upcoming appointments. Lexi's swallow study was a major set-back for us and we are disappointed that she has not made improvement in her swallowing. We must continue to thicken all of her liquids. Pray that we get better news at our next appointments.
On a side note- today while we were waiting in the ER, we told Lexi that the doctor would be coming in soon. She looked right at us and said CLEARLY "Doctor!" So cute, but so sad that she knows so many doctors so young! :-)
As always, thank you all for your continued prayers and concern for Lexi!
Friday, September 24, 2010
Friday, August 6, 2010
August 6th- Relaxing Summer is Over
We just finished a crazy week with Lexi- 16 appointments! We are so glad it's over! Here are several updates:
We have been taking Lexi to Fostoria twice a week for Vital Stim therapy. She absolutely hates it! They now have to tape the 8 electrodes to her face and neck because she snaps them off so quickly. We have seen an increase in drooling, which we hope is a good sign that her nerves are working! She has a swallow study scheduled for September 21st to see if she is still aspirating.
We took Lexi to Cleveland Clinic for 2 days (9 appointments) this week. She saw cardiology and things checked out really well! They still want to do another MRI of her heart because they are concerned her blood vessels leading away from her heart are too narrow. But, we will be able to wait and combine it with her next brain MRI to save her the sedation process. That will be sometime this fall. We are so glad that her heart is doing so well!
Lexi also saw the allergist and completed a four hour milk challenge. They had us sit in a room and they fed her milk starting with a small amount and ending with a large amount. Then, we waited to see what happened. She passed her milk challenge with no issues at all!! This means she has outgrown her milk allergy! We are very excited to get this little peanut on some milkshakes and whipping cream! Lexi has never had ANY dairy so we'll see what she thinks.
Finally, the other "major" appointment we had was with the feeding clinic. Lexi is supposed to gain 10 grams a day. We last saw the feeding clinic in June. Since June, she has gained 10 grams TOTAL!! Ugh! They are concerned that she is not absorbing all of her food. So, we have an appointment with GI on August 25th to look at probable causes. We're going to pray that it is nothing serious.
On a side note- Lexi is making HUGE progress with her large motor. She is starting to crawl!! We are so excited! We are also making some gains with her feeding. Not as many as we'd like, but we'll take the small gains too!
Finally, we are still looking into Sensory Integration Therapy for Lexi and exploring some ways to fund the $3200 for this. If anyone has suggestions, we are open to them.
You can e-mail us at thehocansons@yahoo.com
Please pray for:
Our many appointments. With 4 therapies a week plus vital stim 2-3 times a week and various doctor's appointments, I feel REALLY overwhelmed and REALLY behind on "life" (bills, cleaning, etc). Pray for time management and a lot of strength.
Pray that we are able to find various ways to provide the $3200 for Lexi's sensory treatments. We went to Toledo a few weeks ago to meet with the team and do an "experimental session" and it went really well. We REALLY think this treatment will help Lexi but insurance has denied covering it. Pray that we are able to make the best decision for Lexi!
Finally, with all the prayer requests- we wanted to share 2 praises:
1. Lexi has been put into ankle braces called "sure-steps." She turns her ankles in when she tries to take steps or stand (pronates). So, these braces will help keep her ankles where they should be! The braces are $1800! BUT, we were able to participate in a study with Sure-step and they are covering the ENTIRE cost of the braces AND the appointments that go with it!
2. We have a family friend that is a speech therapist. She saw a post on facebook about vital stim. She works in a nearby town and has graciously worked it out that she will come to our house to do Lexi's next round of 12 treatments!! This is a HUGE blessing as taking 3 hours a day, 3 days a week is becoming too much to handle! Thank you Diane!!
Once again, thank you for your continued prayers and genuine interest in Lexi's progress.
We have been taking Lexi to Fostoria twice a week for Vital Stim therapy. She absolutely hates it! They now have to tape the 8 electrodes to her face and neck because she snaps them off so quickly. We have seen an increase in drooling, which we hope is a good sign that her nerves are working! She has a swallow study scheduled for September 21st to see if she is still aspirating.
We took Lexi to Cleveland Clinic for 2 days (9 appointments) this week. She saw cardiology and things checked out really well! They still want to do another MRI of her heart because they are concerned her blood vessels leading away from her heart are too narrow. But, we will be able to wait and combine it with her next brain MRI to save her the sedation process. That will be sometime this fall. We are so glad that her heart is doing so well!
Lexi also saw the allergist and completed a four hour milk challenge. They had us sit in a room and they fed her milk starting with a small amount and ending with a large amount. Then, we waited to see what happened. She passed her milk challenge with no issues at all!! This means she has outgrown her milk allergy! We are very excited to get this little peanut on some milkshakes and whipping cream! Lexi has never had ANY dairy so we'll see what she thinks.
Finally, the other "major" appointment we had was with the feeding clinic. Lexi is supposed to gain 10 grams a day. We last saw the feeding clinic in June. Since June, she has gained 10 grams TOTAL!! Ugh! They are concerned that she is not absorbing all of her food. So, we have an appointment with GI on August 25th to look at probable causes. We're going to pray that it is nothing serious.
On a side note- Lexi is making HUGE progress with her large motor. She is starting to crawl!! We are so excited! We are also making some gains with her feeding. Not as many as we'd like, but we'll take the small gains too!
Finally, we are still looking into Sensory Integration Therapy for Lexi and exploring some ways to fund the $3200 for this. If anyone has suggestions, we are open to them.
You can e-mail us at thehocansons@yahoo.com
Please pray for:
Our many appointments. With 4 therapies a week plus vital stim 2-3 times a week and various doctor's appointments, I feel REALLY overwhelmed and REALLY behind on "life" (bills, cleaning, etc). Pray for time management and a lot of strength.
Pray that we are able to find various ways to provide the $3200 for Lexi's sensory treatments. We went to Toledo a few weeks ago to meet with the team and do an "experimental session" and it went really well. We REALLY think this treatment will help Lexi but insurance has denied covering it. Pray that we are able to make the best decision for Lexi!
Finally, with all the prayer requests- we wanted to share 2 praises:
1. Lexi has been put into ankle braces called "sure-steps." She turns her ankles in when she tries to take steps or stand (pronates). So, these braces will help keep her ankles where they should be! The braces are $1800! BUT, we were able to participate in a study with Sure-step and they are covering the ENTIRE cost of the braces AND the appointments that go with it!
2. We have a family friend that is a speech therapist. She saw a post on facebook about vital stim. She works in a nearby town and has graciously worked it out that she will come to our house to do Lexi's next round of 12 treatments!! This is a HUGE blessing as taking 3 hours a day, 3 days a week is becoming too much to handle! Thank you Diane!!
Once again, thank you for your continued prayers and genuine interest in Lexi's progress.
Friday, July 9, 2010
Friday, July 9th- A Relaxing Summer!
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!
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!
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!
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