A HUGE PRAISE!!

We took Lexi to Cleveland Clinic yesterday for four appointments. Here's the break-down of her day:
Opthomology- We had not seen Lexi's Optho for 4 or 5 months and he was very pleased with her progress. Lexi's eyes are much straighter than they were 5 months ago and the Dr. has ruled out her needing more eye surgery for at least the next 6 months!

ENT- The ENT has scheduled another swallow study for Lexi to see if she is still aspirating on thin liquids. This is probably one of her biggest obstacles still in eating/drinking! The swallow study will be in September.

Audiology- Lexi did much better on her hearing test this time and they have been able to rule out a moderate hearing loss! They are certain there is nothing major going on with her hearing and are guessing her extreme speech delays are due to her facial nerve damage.

Feeding Clinic- This was our most productive appointment of the day (although they all went well!). Lexi is exactly 3 feet tall and weights 27lbs 6 oz!! She is in the 30th percentile for her weight!!! The clinic was thrilled with her progress. SO, they have decided to take her off all her day time feeds!!! This means no more chasing her around the house on a tube! We only have to feed her through the night! This is a huge blessing and we are so excited! We have to make sure we really focus on keeping food in her to keep her weight up but we are very determined!!

Finally, the Physical Therapists Lexi sees have decided to put her in AFO's which are taller leg braces then she has been wearing. Lexi is still really unstable when she walks and tends to walk side to side instead of straight forward. We see a pediatric orthotist in Toledo on August 10th to get her fitted for some custom leg braces (can't wait to see THAT bill!) :-)

Please pray that:
We can keep Lexi's weight up and keep her off this feeding tube! This is a HUGE step forward to move her off her day-time feeds and I am determined that she will not move backwards!

Pray for Lexi's Ortho appointment on the 10th. Pray that the Orthotist will be able to find the right braces for Lexi to help her become a more stable walker.

Pray for her upcoming swallow study. Pray that Lexi gets an "all-clear" for thin liquids!

Thank you all for your continued prayers and support!

Finally!! We are on the "up-swing!!"

Has it really been almost 4 months since I've updated this? I can't believe how quickly time flies! BUT, we have a lot of GOOD news to share this time!

Lexi has been making remarkable progress in the past few months. We finally got her heart, brain and spine MRI scheduled for the end of May. It was a 5 hour procedure and Lexi came through it all like a champ! The neurologist's office called us a few days later and told us that the findings on Lexi's brain MRI were "quite remarkable." Lexi's chiari malformation (brain stem hernation) has actually SHRUNK!! Her hernation was 9mm and it is now 6mm! That is quite a remarkable difference! The doctor said they never see this happen and really don't have an explanation for it....we do!! LOTS and lots of prayers from our many friends and family!! Thank you!! Lexi does still have what is considered a moderate chiari, but brain surgery is post-poned yet again for at least another 6 months! Praise the Lord!

Lexi's heart MRI also had pretty good results. Her cardiologist said they did find some additional narrowing in Lexi's blood vessels between her heart and her lungs. They are going to do more frequent Echo-cardiograms (every 2-3 months) for the next year to keep a close eye on the blood vessels and see how things progress. However, her other two narrowings are both "acceptable" so nothing else is needed right now!

Lexi has really taken off developmentally. She is toddling around and climbing on EVERYTHING, including our dishwasher door (which she broke and we had to replace!). Definitely blessings in disguise! :-) She is also starting to use some words on her own and LOVES to sing "Row row row your boat." Lexi is also eating pureed foods for every meal. She's still not able to chew or have a great deal of lip closure, but she is definitely gaining some weight!

I took Lexi to see the hospital pediatrician yesterday. He had not seen her for several months and he was very please with her progress. Perhaps some of the best news we received is that Lexi is up to 27 pounds! She is in the 25% on the growth chart for weight!! The hospital pediatrician took her off her thyroid medication, which means she is just down to two medications a day, AND he has taken her off her morning tube feed. Lexi has gone from 4 feeds daily to one at nap time and a continuous feed overnight. With her being so mobile now, only having her hooked up to a feeding tube while she is sleeping is a HUGE blessing for us!

Please pray that Lexi contiues to keep her weight up! Pray that we find the right foods to feed her (and the time to puree them all) so she does not have to add a feed back into her schedule.

Lexi will be attending Blanchard Valley Schools in the fall, probably once she turns three at the end of October. Jon and I are having a very difficult time sending her off to BVS. Please pray for a sense of peace and comfort for us!

After taking two entire months off of doctors appointments, we are heading up to Cleveland Clinic three times during the next month to get all of her appointments out of the way before she heads to school. Pray that all 10 of her appointments go well! We will keep you posted as we finish this long round of check-ups! We will be seeing ENT, GI, Opthomology, Neurology, Cardiology, Endocrinology, Allergy, and she will be having an audiology test, swallow study and 4 hour allergy test to see if she has outgrown her egg allergy! Shew! It's going to be a whirlwind! Pray for strength for sweet little Lexi!

Enjoy the rest of your summer! Lexi loves the water so we've been spending a lot of time out back in her baby pool!

March 23rd- The Waiting Game!

Well, unfortunately Lexi's MRI appointment has been rescheduled until April 26th! The MRI dept didn't realize Lexi needed a brain, heart AND spine MRI and did not schedule enough time (they'll need 5-6 hours instead of 3). We were very frustrated when they called because of all the preparations we have to make to get her to Cleveland (hotel, babysitters for twins, day off work for family going with me....) But, what do we do- ask for a discount? Yeah right! The GOOD news, however, is that I did not schedule any appointments in Cleveland until after the MRI- so it looks like we get a month-long break from Cleveland Clinic appointments! Hooray for a blessing in disguise! We probably won't update again until right after Easter!

March 6- a very full day!

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!

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!

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!

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!