I'm a little behind in updating everyone on our most recent trip to Cleveland Clinic! Sorry!
We went to Cleveland Clinic on Friday, Feb 25th (actually decided to leave the night before to beat the major snow storm- SO glad we did!)
Lexi had 3 very lengthy appointments and here's the updates:
Nuerology- Unfortunately, this appointment with Lexi's neuro doctor did not go as well as we hoped. While Lexi IS making progress, the Dr. is concerned with how long her progress is taking. For instance, most toddlers will start taking a few steps and within a month or so, progress to full walking. Lexi has been taking a few steps for several months and isn't making as quick of progress as the doctor would like. He is concerned about her poor balance. This is one major symptom of a chiari (brain stem herniation). So, he has scheduled a brain MRI for March 22nd. Depending on the results of the MRI, he may also schedule a full-body nerve scan in April.
Cardiology- Lexi's cardiologist was pleased with the results from her EKG but, since the nuerologist is doing an MRI in a few weeks, the cardiologist decided instead of doing an echocardiogram, she will "tag on" a heart MRI after the brain MRI on the 22nd. This will give the cardiologist a very clear picture as to what is happening with Lexi's 2 heart defects.
ENT- This appointment took MUCH longer than expected. The ENT wanted to remove a significant amount of earwax from Lexi's ear. After almost an hour, it appears as though the Dr didn't realize exactly how much ear wax Lexi really had! But, the good news is that the ENT thinks the earwax may have been affecting Lexi's hearing. So, after finally getting out all the wax, they sent us directly to see an audiologist for a thorough hearing test. Unfortunately, they were unable to get a full test done (she shut down after about 30 minutes- it had been a LONG day!). They were able to conclude, however, that her ear drum IS working fine! They will repeat the test (AGAIN) in 2 months and are also planning another swallow study as Lexi still aspirates on thin liquids.
So, March 22nd, we go for a REALLY important MRI of Lexi's heart and brain. This entire process will take 4-5 hours and they will have to sedate her and put her on a ventilator while she is under. This, however, will give us very clear input as to whether or not she'll need brain surgery in the next few months (so, yes, we are VERY nervous about the test!)
Please pray that the results of the heart and brain MRI have a positive outcome! Pray for our family and little Lexi while she once again is put under and on a ventilator. It's always hard to see your little one go through so much!
I will update again after we get the results back from her MRI, which will be the week of March 28th!
As always, thank you for your continued prayers for Lexi Mae! She is making so much progress but still has a long road ahead of her!
Sunday, March 6, 2011
Monday, January 10, 2011
January 10- I can't believe it!
We just got back from a very long day at Cleveland Clinic. Lexi saw three doctors today- the Feeding Clinic, Otolaryngology and GI. Imagine taking a now very mobile 2 year old (yet not mobile enough to let just run) to 3 doctors appointments for almost 5 hours. No toys, nothing "child friendly" AND very dirty hospital floors! (I mean, Cleveland Clinic is VERY clean, but they say a hospitals is the best place to get sick!) Needless to say, it was a really long day trying to keep Lexi from crawling on the floor and/or trashing the waiting room and doctors' offices!
Here's the update:
Feeding Clinic- I may have to repeat this twice (because I had to ask the nutrionist to say it twice!) Lexi gained OVER her goal!! I said OVER her goal! They want her to gain 10 grams a day- she gained 14!! AND she more than exceeded her goal for height! She is now 23lbs 13 oz and 2ft 9 inches. For the first time EVER, Lexi is now on the growth chart!!!! HOORAY!! This is a HUGE HUGE blessing! She's in the 10th percentile for weight and 25th percentile for height! We were hoping the Feeding Clinic would tell us we could begin to lessen her tube feeds, but they would like us to continue our current course and come again in 3-4 weeks. They are working on pumping as many calories into Lexi as they can and spent a great deal of time going over how to puree various table foods with me- no more baby food for this "big girl!" Did you know you can puree grilled cheese and peanut butter and jelly? I mean- who really needs to know that...unless you have a little one that doesn't know how to chew! So, tomorrow I begin to experiment with pureeing all sorts of table foods and then freezing them for Lexi to eat. Should be interesting (since I don't really cook!)
GI- The GI doctor was thrilled with Lexi's progress and said the next time we come, she will most likely need a bigger G-tube. We'd prefer her to not NEED a G-tube, but at least moving her to a bigger tube means she herself getting bigger! We are working with the GI doctor on changing up her feeding doses and rates to get her feeds done quicker. Right now it takes Lexi almost an hour to "feed" through her tube and this becomes very tasking to chase her around the house as she crawls or cruises everywhere. If we don't watch her, she can pull her G-tube completely out, which becomes a big mess. The tweaking of her feeds will take several months, but hopefully we will eventually be able to feed her over a half-hour instead!
Otolaryngology- We have decided to go ahead and pursue another round of vital stim for Lexi. So, in the beginning of February, we will add another 3 appointments a week back on to our schedule. (Vital stim is where they hook tiny electrodes to her face and send electric pulses to her face and throat for 1 hour, 3 times a week). Once this 3rd round of therapy is done, we'll attempt yet another swallow study to see if she still aspirates on thin liquids. Lexi also apparently has an extreme amount of ear wax in her right ear and they are concerned it is affecting her hearing. The doctor tried to remove it today, but keeping a squirming, screaming 2-year old still was not working well and they were concerned about damaging her ear drum. So, we will give her drops in her ears twice a day and "get to" go back to Cleveland Clinic in 2 weeks. The droplets should make the process a little easier! Once this is done, we will repeat the hearing test that she failed a few months ago!
Prayer Requests:
We go back to Cleveland Clinic on January 27th for Lexi's ears and an opthomology appointment. Pray all goes well and that the roads stay clear- traveling to Cleveland can be a bit tricky this time of year with all the snow they get!
Pray that Lexi continues to gain weight (and a HUGE praise she has gained so much). Also pray that I am able to figure out this whole pureeing process! We would really like for Lexi to learn how to chew to eat "normal" food but the Feeding Clinic said they have a little of kids that are unable to chew and do not require a feeding tube- pureeing food only changes to texture, not the calories! So, we will pursue this option with an open mind!
We hope you all had a Happy start to the New Year! We will post again after her next round of appointments!
Here's the update:
Feeding Clinic- I may have to repeat this twice (because I had to ask the nutrionist to say it twice!) Lexi gained OVER her goal!! I said OVER her goal! They want her to gain 10 grams a day- she gained 14!! AND she more than exceeded her goal for height! She is now 23lbs 13 oz and 2ft 9 inches. For the first time EVER, Lexi is now on the growth chart!!!! HOORAY!! This is a HUGE HUGE blessing! She's in the 10th percentile for weight and 25th percentile for height! We were hoping the Feeding Clinic would tell us we could begin to lessen her tube feeds, but they would like us to continue our current course and come again in 3-4 weeks. They are working on pumping as many calories into Lexi as they can and spent a great deal of time going over how to puree various table foods with me- no more baby food for this "big girl!" Did you know you can puree grilled cheese and peanut butter and jelly? I mean- who really needs to know that...unless you have a little one that doesn't know how to chew! So, tomorrow I begin to experiment with pureeing all sorts of table foods and then freezing them for Lexi to eat. Should be interesting (since I don't really cook!)
GI- The GI doctor was thrilled with Lexi's progress and said the next time we come, she will most likely need a bigger G-tube. We'd prefer her to not NEED a G-tube, but at least moving her to a bigger tube means she herself getting bigger! We are working with the GI doctor on changing up her feeding doses and rates to get her feeds done quicker. Right now it takes Lexi almost an hour to "feed" through her tube and this becomes very tasking to chase her around the house as she crawls or cruises everywhere. If we don't watch her, she can pull her G-tube completely out, which becomes a big mess. The tweaking of her feeds will take several months, but hopefully we will eventually be able to feed her over a half-hour instead!
Otolaryngology- We have decided to go ahead and pursue another round of vital stim for Lexi. So, in the beginning of February, we will add another 3 appointments a week back on to our schedule. (Vital stim is where they hook tiny electrodes to her face and send electric pulses to her face and throat for 1 hour, 3 times a week). Once this 3rd round of therapy is done, we'll attempt yet another swallow study to see if she still aspirates on thin liquids. Lexi also apparently has an extreme amount of ear wax in her right ear and they are concerned it is affecting her hearing. The doctor tried to remove it today, but keeping a squirming, screaming 2-year old still was not working well and they were concerned about damaging her ear drum. So, we will give her drops in her ears twice a day and "get to" go back to Cleveland Clinic in 2 weeks. The droplets should make the process a little easier! Once this is done, we will repeat the hearing test that she failed a few months ago!
Prayer Requests:
We go back to Cleveland Clinic on January 27th for Lexi's ears and an opthomology appointment. Pray all goes well and that the roads stay clear- traveling to Cleveland can be a bit tricky this time of year with all the snow they get!
Pray that Lexi continues to gain weight (and a HUGE praise she has gained so much). Also pray that I am able to figure out this whole pureeing process! We would really like for Lexi to learn how to chew to eat "normal" food but the Feeding Clinic said they have a little of kids that are unable to chew and do not require a feeding tube- pureeing food only changes to texture, not the calories! So, we will pursue this option with an open mind!
We hope you all had a Happy start to the New Year! We will post again after her next round of appointments!
Monday, December 27, 2010
December 28th- Holiday Whirlwind!
Well, Merry Belated Christmas! I did not realize how long it's been since we have posted about Lexi. My apologies! Life just gets in the way! :-) I'll try to keep this as brief as possible and PROMISE to do a better job updating this coming year. Plus, I took a self-prescribed break from Cleveland Clinic for November and December so we didn't have as much to report. Lexi had doctors that had asked to see her, but since nothing was life-threatening, I decided that mommy and Lexi needed a break from trips more than the doctors needed to see her! And yes- there IS still such a thing as taking control of your own (or your child's) medical decisions! Hooray! We REALLY REALLY enjoyed the break!
Here's the updates:
Lexi turned 2 on October 28th and celebrated with..... a doctors appointment of course!! She has finally gained weight and is up to almost 22 pounds! Still a peanut for 2 years old but we'll take it! I'm adding some new pictures to the site this week so be sure to check back for some cute birthday photos and Christmas photos. Unfortunately, we spent Thanksgiving day in the hospital with Lexi. She woke up Thanksgiving morning throwing up and had a low-grade temp. We weren't overly concerned until she refused to put any weight on her legs. She literally laid on the floor and cried for over 2 hours! With Lexi's brainstem herniation, odd behaviors like this really scare us! We paged the hospital pediatrician and he called us immediately and asked us to take her to the ER. So, we spent 4 hours in the ER. We felt terrible as Dr. Hannawalt decided to run a bunch of tests so they had to call in the X-ray techs, MRI techs and ultrasound techs on Thanksgiving! After all this, it turns out Lexi had something called "transient synovitis." Basically, she developed a viral infection that went to her hip joints. However, we're happy to report that this is probably the biggest "set-back" she's had in the last 3 months! If that's it, we'll take spending Thanksgiving Day in the Findlay hospital! Here's her other updates:
PT/OT- Lexi is crawling EVERYWHERE! We are trying really hard to be grateful, but she is in to everything and has absolutely no fear! She loves water....any kind of water.... especially......toilet water! We need someone to develop automatic toilet seats that close when little girls are done with them! Lexi also took TEN steps 2 weeks ago when the PT was working with her. Hooray! She's a long way from walking independently, but the fact that she can take a few steps means she WILL walk eventually and that's what keeps up motivated!
Speech- Lexi is our little parrot- she repeats everything we say. Unfortunately, she still isn't able to say and "m's," "b's" or "p's." If you think about it, this is such a vital part of our language. So, it's really hard to make out many words. Lexi calls me "nana" my mom "no no" (for momo), and my dad "tata" (for papa). We completed yet another round of vital stim therapy in October with a wonderful speech therapist that came to our house but we have not seen a ton of improvement! We are going to attempt yet another round of vital stim in February. However, adding 3 appointment a week to our 5 appointments already makes it really difficult to manage!
Feeding- Lexi has made a few small improvements in eating. Someone gave us a Magic Bullet and this has been a HUGE help in trying new foods with Lexi. We also got a great deal on a travel-size hand mixer so we are able to take it with us and puree anything she eats. It is difficult, however, for the past 2 years to specially prepare all of Lexi's food and then feed it to her. Those of you that are newer parents- you may remember the sigh of relief when your child started feeding themselves and you could actually enjoy a meal! We are still not to that point (you'd think I'd be 100 pounds too after all the running around I do during meals! ha!) We are hopeful that Lexi will pick up the whole idea of eating AND chewing sooner than later! This is probably the most daunting task of caring for her. We hate her feeding bag as it beeps many times at night, gets caught on toys, etc and we are constantly running after her when she's on a feed because she's so mobile but not big enough to hold the feeding bag on her back yet.
Specific Prayer Requests:
We go to Cleveland Clinic January 6th, 10th and 25th (AND we are taking a MUCH needed vacation in the middle of those appointments!). Pray that the appointments go well and that the doctors see big improvements with Lexi. We see ENT, GI, Feeding Clinic and Opthomology in January. In February, we will see the cardiologist and neurologist. At this time, they will schedule an MRI for Lexi's heart and brain to check her progress and determine if brain and/or additional heart surgery is needed. We are praying ALREADY that we can once again post-pone more surgeries!
As always, pray for strength, endurance and patience for Jon and I. It is exhausting to keep up with all of Lexi's appointments and medical needs and I have greatly enjoyed the past 6 weeks off! Pray that I have a good attitude heading into the New Year (and crazy schedule again) and that we can manage our time wisely to accommodate everything Lexi Mae needs!
Finally, Jon is taking 5 college classes (15 hours) to finish up his degree in Business Management from Liberty University and I must take 6 additional hours of master classes to keep my teaching license renewed. I honestly don't know how we are going to manage all of this before June!! We need LOTS of prayers that our hours are spent wisely and that we can still find time to be with the girls and work with Lexi on her therapies while doing studies as well!
Thank you all for your continued support! We have had many unexpected gifts this Christmas season. It means so much to our family that so many realize that Lexi is making HUGE progress but still has a lot of obstacles a head of her. We covet your prayers! I promise to make a better effort at updating her blog- we will definitely do so after her 1st round of appointments on January 1oth!
Praying for a blessed New Year for all of you!
Here's the updates:
Lexi turned 2 on October 28th and celebrated with..... a doctors appointment of course!! She has finally gained weight and is up to almost 22 pounds! Still a peanut for 2 years old but we'll take it! I'm adding some new pictures to the site this week so be sure to check back for some cute birthday photos and Christmas photos. Unfortunately, we spent Thanksgiving day in the hospital with Lexi. She woke up Thanksgiving morning throwing up and had a low-grade temp. We weren't overly concerned until she refused to put any weight on her legs. She literally laid on the floor and cried for over 2 hours! With Lexi's brainstem herniation, odd behaviors like this really scare us! We paged the hospital pediatrician and he called us immediately and asked us to take her to the ER. So, we spent 4 hours in the ER. We felt terrible as Dr. Hannawalt decided to run a bunch of tests so they had to call in the X-ray techs, MRI techs and ultrasound techs on Thanksgiving! After all this, it turns out Lexi had something called "transient synovitis." Basically, she developed a viral infection that went to her hip joints. However, we're happy to report that this is probably the biggest "set-back" she's had in the last 3 months! If that's it, we'll take spending Thanksgiving Day in the Findlay hospital! Here's her other updates:
PT/OT- Lexi is crawling EVERYWHERE! We are trying really hard to be grateful, but she is in to everything and has absolutely no fear! She loves water....any kind of water.... especially......toilet water! We need someone to develop automatic toilet seats that close when little girls are done with them! Lexi also took TEN steps 2 weeks ago when the PT was working with her. Hooray! She's a long way from walking independently, but the fact that she can take a few steps means she WILL walk eventually and that's what keeps up motivated!
Speech- Lexi is our little parrot- she repeats everything we say. Unfortunately, she still isn't able to say and "m's," "b's" or "p's." If you think about it, this is such a vital part of our language. So, it's really hard to make out many words. Lexi calls me "nana" my mom "no no" (for momo), and my dad "tata" (for papa). We completed yet another round of vital stim therapy in October with a wonderful speech therapist that came to our house but we have not seen a ton of improvement! We are going to attempt yet another round of vital stim in February. However, adding 3 appointment a week to our 5 appointments already makes it really difficult to manage!
Feeding- Lexi has made a few small improvements in eating. Someone gave us a Magic Bullet and this has been a HUGE help in trying new foods with Lexi. We also got a great deal on a travel-size hand mixer so we are able to take it with us and puree anything she eats. It is difficult, however, for the past 2 years to specially prepare all of Lexi's food and then feed it to her. Those of you that are newer parents- you may remember the sigh of relief when your child started feeding themselves and you could actually enjoy a meal! We are still not to that point (you'd think I'd be 100 pounds too after all the running around I do during meals! ha!) We are hopeful that Lexi will pick up the whole idea of eating AND chewing sooner than later! This is probably the most daunting task of caring for her. We hate her feeding bag as it beeps many times at night, gets caught on toys, etc and we are constantly running after her when she's on a feed because she's so mobile but not big enough to hold the feeding bag on her back yet.
Specific Prayer Requests:
We go to Cleveland Clinic January 6th, 10th and 25th (AND we are taking a MUCH needed vacation in the middle of those appointments!). Pray that the appointments go well and that the doctors see big improvements with Lexi. We see ENT, GI, Feeding Clinic and Opthomology in January. In February, we will see the cardiologist and neurologist. At this time, they will schedule an MRI for Lexi's heart and brain to check her progress and determine if brain and/or additional heart surgery is needed. We are praying ALREADY that we can once again post-pone more surgeries!
As always, pray for strength, endurance and patience for Jon and I. It is exhausting to keep up with all of Lexi's appointments and medical needs and I have greatly enjoyed the past 6 weeks off! Pray that I have a good attitude heading into the New Year (and crazy schedule again) and that we can manage our time wisely to accommodate everything Lexi Mae needs!
Finally, Jon is taking 5 college classes (15 hours) to finish up his degree in Business Management from Liberty University and I must take 6 additional hours of master classes to keep my teaching license renewed. I honestly don't know how we are going to manage all of this before June!! We need LOTS of prayers that our hours are spent wisely and that we can still find time to be with the girls and work with Lexi on her therapies while doing studies as well!
Thank you all for your continued support! We have had many unexpected gifts this Christmas season. It means so much to our family that so many realize that Lexi is making HUGE progress but still has a lot of obstacles a head of her. We covet your prayers! I promise to make a better effort at updating her blog- we will definitely do so after her 1st round of appointments on January 1oth!
Praying for a blessed New Year for all of you!
Friday, September 24, 2010
1 week- 3 hospitals!
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!
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, 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!"
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