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!

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.

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!

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!"

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!

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!

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!

March 17th- Change of Plans1

We got a little bit of a surprise on Monday morning. I took Lexi to her therapy and realized she was sounding really wheezy. So we checked her pulse ox and it was in the low 90s. I called the hospital pedicatrician and they agreed to see her in the ER. After a series of testing, bloodwork and X-rays, it turns out poor Lexi Mae has pneumonia and RSV (a virus that attacks small children's respiratory system). With Lexi being a heart baby, this becomes a bigger deal. She is at Blanchard Valley Hospital on the ICU wing.
Today, she is just having a rough time "turning the corner" to feeling better. The pedaitric hospitlists said he's heard 80 year old women who have sounded better than Lexi. They are giving her treatments every 3 hours today to try to knock this out of her and also have her on steroids to help her lungs. Every time they try to take her off her oxygen, her pluse-ox drops into the 80s (it's supposed to be 100). Pleaase pray Lexi will show big improvements today!

As far as her brain surgery goes, we spoke with the cardiologist and neurosurgeon yesterday. They are post-poning her surgery until May 12th as she needs 2 months for her lungs to heal. We're actually thankful that they are post-poning the surgery because after this unexpected stay. I can't imagine turning around and being in the hospital for 10 days next week.

Please keep Lexi n your prayers. Please also pray for my family as they are once again juggling the twins around. Jon is working during the day and coming to the hospital in the evenings so I can run and see the twins for an hour or so before he comes back home and puts them to bed. We are hoping to come on by Friday, but it's completely up to Lexi!

Thank you for your prayers!

Saturday, March 13th- Decision Made

After a lot of research, talking with many doctors and tons of praying, we have decided to move forward with brain surgery for Lexi. (Discussing it usually brings me to tears). We spoke with Lexi's neurologist and the neurosurgeon several times this past week, as well as her local hospital pediatrician and all 3 doctors feel it is best to move forward with Lexi having surgery. Lexi has some unexplained bouts of vomiting and fussiness, especially at night. She also has a significant chiari malformation (9-10mm) and the herniation is actually touching her first vertebra. The concern is, if we wait and do nothing, we may run into an emergency situation. With Lexi being a heart patient, she needs a special team, headed by a pediatric cardiac anesthesiologist, to do this surgery. Doing the surgery now ensures we won't run into any unplanned circumstances and that Lexi will receive the best and safest care possible.

Lexi's brain surgery is scheduled for Wednesday, March 24th. She will be the first patient of the day. The surgeon will remove about an inch of a block of bone at the base of her skull and, most likely, the first vertebra as well. If needed, they will also put a small mesh covering on her dura (covering of the brain) if removing the bone alone doesn't get rid of the pressure. She will be in surgery about 4 hours. The doctor is estimating her to be in ICU 3-4 days and in the hospital pediatric unit about 7-10 days.

Prayer Requests:
1. Pray for the team of doctors as they prepare for Lexi's surgery. Pray that the right people are put on her team so she will receive the best care possible. Lexi is "quite a bit younger" than most of the chiari patients that are operated on- and she is only 18 lbs. Please pray for steady hands for the neurosurgeon!
2. Pray for our fears of Lexi going through a second MAJOR surgery (and her 4th total surgery in 16 months). Her heart surgery was a nightmare and we are terrified for her. Please pray that everything goes according to plan! We would love to be home in time for Easter. Even if we can't be at church or with family, we would like to spend it at home with the twins!
3. Pray that we will be able to get a room at the Ronald McDonald House. I will be staying in the hospital room with Lexi, but Jon and my other family members that will be rotating help will need a place to stay. Otherwise, the cheapest hotel at Cleveland Clinic is at least $125 per night. Along with our meal expenses (the cafeteria is good but VERY expensive), this could become a very pricey 10 days. Unfortunately, the RMH at the Clinic goes on a first-come basis. We will not know if we have a room until after 2pm on the 23rd.
4. Finally, pray for the twins, Aleah and Elizabeth, as they will once again be gone from Mommy (and Daddy for part of the time). Jon will stay the 24th- 27th but has to return to work. They will also be bounced around quite a bit during the day while Jon works. Aleah is a mommy's girl and I think this is one of the more difficult parts of Lexi having another surgery- leaving my other 2 little ones again!

Friday, February 19th- 2 days in Cleveland

Note: this is a very lengthy post! I know some really like details while others just want the "big picture!" So, I've put a summary at the bottom!! We really appreciate your continued prayers and the many of you that often ask "how's Lexi doing?"

We made a trip to Cleveland yesterday and today. Lexi woke up Tuesday morning very ill. She has been running a temp and is unable to keep down any of her regular feeds (she can only keep down pedia-lyte). However, since this is the 3rd episode like this in in 3 weeks, we were concerned that it was not simply "a flu bug." 3 weeks ago when these "episodes" started, Lexi was taken to the ER and the pediatrician ran every test imaginable- blood tests, chest X-rays, urinalysis, etc and NOTHING was abnormal. We called the GI dept at Cleveland Clinic Tuesday and the Drs are concerned that the vomiting could be related to Lexi's chiari malformation.

Yesterday, we went to Cleveland Clinic to see the opthomologist for her post-op check-up. Lexi's eyes are healing well. She has a small cyst developing on her left eye because the stitches are irritation her cornea. If it does not go away by Monday, they will treat it with additional medication. We then saw a speech pathologist in hopes to get Lexi at least babbling as she only makes "vowel" sounds. However, the speech pathologist thinks that Lexi will take a very long time to be able to really communicate due to her facial nerve damage. We are going to start really focusing on comprehension with her at this point. Finally, we were able to see a GI doctor as well yesterday. They are doing a full lab work-up on Lexi to rule out any infections and/or metabolic issues. Next Wednesday, they will also do an upper GI study on her to make sure everything is emptying the right way (if things aren't going down and out the right way- they usually come back up!). Finally, the Dr put Lexi on a new medication due to concern that she has an "syndrome" called CVS- cyclic vomiting syndrome in which, usually due to migraines, you throw up continuously for a few days, get completely better for a time and then repeat!

We spoke with the neurosurgeon earlier this week and they have scheduled her brain surgery for March 24th :-( Due to her most recent symptoms, Lexi's neurologist requested to see her today. He spent over an hour with us and was able to show us her MRI results. The most difficult thing with Lexi is- are her symptoms related to her chiari or to her cranial nerve damage? The neurologist is really uncertain of what to do with Lexi. After an hour of discussion, we have decided to keep her surgery date for March 24th and keep a really close eye on her current symptoms. If they go away soon, and/or if GI can find a problem that can explain the vomiting, we may be able to put off surgery a little while longer and wait for Lexi to get a little bigger. However, if the vomiting does not go away, we will need to do surgery to eliminate pressure in the brain from her herniated brain stem.

SUMMARY:
Lexi's MRI results show some moderate crowding in her cerebellum, but the fluid flow around the brain is "acceptable." However, due to Lexi having a a significant chiari malformation, the neurosurgeon feels Lexi should have brain surgery, set for March 24th. Lexi has been very ill off and on the past 3 weeks and her doctors are concerned that her chiari is getting worse. The GI doctors are trying to rule out a GI issue first and we have more tests for this next week. However, if nothing GI related can be found and the vomiting, sleepless nights and fussiness continue, we will need to go through with brain surgery on the 24th.

Specific Prayer Requests:
Please pray for Lexi right now as she is very fussy (and pray for Jon and I as we deal with a sick baby!). Pray for comfort for her.

Pray that these vomiting episodes can be diagnosed. We are REALLY praying that they are NOT related to her chiari and we can avoid brain surgery for a little while longer. However, more importantly, we want Lexi to feel better and make more improvements- so whatever needs done, we will do it!

Finally, pray for wisdom for her team of Doctors and for Jon and I. Lexi is not a clear-cut situation due to her many medical "issues." Pray that we can sort through all of them and the God will give us peace and comfort as we deal with this VERY important decision.

We will know much more after her upper GI next week and once we see if these vomiting episodes continue. We travel to Cleveland Clinic next Wednesday and again Thursday so also pray for safe traveling!

Post eye-surgery, Feb 13th

We are home with Lexi! She did really well yesterday. We are constantly amazed at her strength and tolerance of all the poking and prodding she goes through! She's our little trooper! Lexi is very swollen and has bloody eyes, but surgery went well and there is a 70% success rate! The best news yesterday was that the MRI dept was running behind 2 hours- we were frustrated at 1st, but the opthomologist was literally sitting around waiting for Lexi to show up for her eye surgery. So, she was only sedated for about 6 hours instead of 8 or 9! (Blessings in disguise-we love it!) We will talk with the neurosurgeon about her MRI results later this coming week. We will know more about the success of her eye surgery in 3-4 weeks as her brain now has to "reset" to her new eye position. Please keep us in your prayers this week as Lexi is not to be out much because of her high risk for eye infections. Also, Lexi is supposed to do "resting activities" for a week- should be interesting with 3 littles ones! Thank you all foor your prayers. I can't begin to tell you how hard it is to hand your little baby over to a team of doctors and watch them "go to work" on her- it's perhaps the most difficult thing we've had to do! Your prayers give us the inner strength we need!

Tuesday, February 9th- Eye surgery!!

We received a call on Monday that Cleveland Clinic has moved Lexi's brain MRI and eye surgery up to Friday due to some scheduling issues. Due to the weather today and tomorrow, we will be cramming all of her pre-op appts in on Thursday afternoon in Cleveland. Jon and I will stay overnight with Lexi Thursday in Cleveland.
Lexi goes in for her sedation at 9am Friday morning. They will then do a 3 hour brain MRI and flow study to assess her chiara malformation- this was at the request of the neurosurgeon. They will then keep her under anesthesia and transfer her 2 blocks to the surgery center where she will be the 1st surgery in the afternoon. The opthomologist will go into both eyes, cut the eye muscles, pull them tighter and then put very tiny stitches in the muscles. This should be at least a temporary fix to her "cross-eyes" due to her cranial nerve damage! Lexi will be under anesthesia for 8-9 hours throughout this process. Lexi has been experiencing extreme bouts of reflux this past week and this is an added issue with her being on a ventilator and under anesthesia for this length of time.

Specific Prayer Requests:

Please pray for Lexi as this is a very long time, especially a small heart patient, to be under.

Pray for her anesthesiolgist that will be with her during the entire process and for the doctors doing both the MRI and the eye surgery. We are hopeful that she will be able to come on Saturday!

Pray that the results of her MRI scan show a miraculous difference in her chiari malformation and that Lexi will NOT need brain surgery this spring!

Finally, please keep my sister, Holly, in your prayers as she will have the twins during this time as well as her two little boys!

We will give an update this weekend!

January 12- New Year, new updates

Happy New Year! We hope everyone had a blessed holiday season! We were so thankful to be home with our family this year enjoying a much healthier and happier New Year. Despite her many set-backs and delays this past year, we are so thankful for the progress Lexi has made. She is a real trooper! We also appreciate everyone's continued prayers and concerns for her. One of my good friends put it very well. Lexi's condition is going to be a very long marathon, not a sprint as we originally thought. Pray that we have the endurance she needs!

We went to Cleveland Clinic last Monday and yesterday. The roads yesterday were the worst I have ever experienced and it took my sister Holly and I 4 1/2 hours to get home last evening! But, we were thankful to make it home safely with the terrible road conditions.

Last week, we saw Neurology. Dr. Friedman is very pleased with Lexi's progress. He is confident that her cranial nerve damage is getting better, but does not know if she will fully recover from the damage she suffered. He said the most difficult thing to hear from impatient people- "give it more time!" We were happy to see that he was pleased with the progress she has made, however, since he is the 1st doctor to see her at Cleveland Clinic exactly 1 year ago!

This week, Lexi saw 4 doctors. ENT (ear, nose & throat) did a swallow study with a scope in the office. The good news is Lexi is not aspirating! The bad news is that because of her cranial nerve damage, she can't control liquids and has no chewing motion. They are having us thicken her food even more and continue therapy. The head of pediatric speech pathology helped with the swallow study and afterwards talked with me about Lexi's unique situation. She has agreed to see Lexi every two weeks when we see the feeding clinic. It's our hope that we can get Lexi communicating, most likely by sign language, in the next few months!

We then saw GI and, since Lexi has been extra fussy that past few weeks and throwing up, they have moved her to yet another formula. This formula costs $150 for 4 cans!! Yikes! I am working today on getting it approved through insurance- please pray that they will approve this highly specialized formula! Lexi has lost over 1 pound this past week as well. She is back down to 17lbs 12 oz. This is very discouraging to us! We are praying this new formula puts her back on the weight-gaining track. (Why is it that she LOSES and I GAIN??- I think we need to get his figured out!) :-)

After GI, we were finally able to see the neurosurgeon. Dr. Luciano spent some time with us and walked us through her MRI scans. There are 2 areas of concern on her MRI. He feels that most of Lexi's symptoms are related to her cranial nerve damage during her heart surgery, most likely from loss of blood flow during surgery. However, he does think that a few of her symptoms are related to her chiari malformation as well. So, he is planning yet another MRI for Lexi along with a flow study of her brain. After this, he will meet with us again to discuss the results and the likelihood of brain surgery. They are hoping to do her MRI while she is already sedated during her eye surgery, which is now scheduled for February 15th.

Finally, we had a 2 hour appointment with the sleep disorders clinic. The neuro-sleep doctor is pretty sure that Lexi has sleep apnea. We are very glad that the GI and ENT doctors insisted we have this checked as sleep apnea can put extra stress on your heart! So, we will be doing a 12 hour sleep study at the clinic on February 9th and 10th.

Lexi is getting stronger (and more ornery) and is finally starting to sit-up on her own! Please pray for her continued therapy as well. Jon and I still struggle to find the necessary time to work with her on speech, OT and PT.

Specific Prayer Requests:
Please pray for continued healing for Lexi. We are praying specifically that she recovers fully from her cranial nerve damage and that the healing is quicker than the doctors would ever expect! We are also praying that the 2 areas of concern to the neurosurgeon would come back clear so Lexi does not need surgery!

Pray for our trips to Cleveland as the roads are very slippery during the winter- especially in Cleveland!

Finally, pray for our family as we continue to try to manage all of Lexi's care and deal with twins in their terrible two's! Pray for strength, wisdom and patience.

We will update again in a few weeks when we find out more information on Lexi's eye surgery and her MRI.