Our Local Celebrity

This is the story that was on the front page of the Blanchard Valley School newsletter with a big picture of Miss Lexi Mae! It makes us so thankful for how far she has come. Yes she is really behind for "typical" three year olds, but looking back at her "near death" experience, we realize how lucky we are JUST to have her with us!!

Lexi’s Story

When I learned that I was pregnant in early 2008 we knew we were going to have our hands full.

We already had twin girls - Aleah and Elizabeth - who were just 13-months old when Lexi Mae Hocanson was born on Oct. 28, 2008.

Three children in 13 months! The diaper expense alone was staggering.

Little did we know how full Lexi would make our lives!

Lexi was born without complications, but doctors told us they heard a heart murmur.

We went home after four days in the hospital. Lexi continued to eat well, grow, and was an excellent sleeper. At her two-week check-up, however, our family doctor still heard the heart murmur and thought it was best if we had it checked by a pediatric cardiologist.

Lexi had an echo-cardiogram, followed by a visit to the cardiologist in mid-November. From that point on, our lives have been a blur!

Lexi was diagnosed with a severe coarctation of the aorta. This condition causes the aorta to resemble an hour glass and the doctor could feel no pulses in her lower extremities.

We were admitted to the Neonatal Intensive Care Unit at Blanchard Valley Hospital and transported the next day to Nationwide Children’s Hospital in Columbus, where Lexi was scheduled for open-heart surgery. The doctors said they had done hundreds of these surgeries in 2008 alone, and we should be home in plenty of time for Thanksgiving.

Unfortunately, Lexi’s surgery did not go according to plan. Lexi had a leak in her ventilator during surgery and suffered “near death” experience that required a blood transfusion. After surgery, Lexi was moved to the cardiac intensive care unit where she spent six days in a medically induced coma. She suffered a small stroke and seizures during these few critical days.

When Lexi finally awoke up, I was so excited to hold her and finally be able to feed her a bottle again. But Lexi wanted nothing to do with the bottle. After being awake a short time, I also noticed she was not blinking, and her face seemed almost paralyzed.

We spent the next six weeks at the hospital on the cardiac floor trying to figure out exactly what was happening with Lexi and her unique symptoms. Her heart repair looked good, but she was unable to eat, blink, move most of her face and had lost her gag reflex. After these exhausting few weeks with very few answers, we decided to have her put on a feeding tube, and we were able to fight our way out of the hospital in time to make it home by 11 p.m. on Christmas Eve.

After the holidays, we transferred Lexi’s care to the Cleveland Clinic. At the Clinic, Lexi was diagnosed with cranial nerve neuropathies, an additional heart condition - a supravalvular aortic stenosis - and severe bi-lateral facial nerve damage. Lexi somehow suffered damage to the core of her brainstem, where the cranial nerves are located, causing symptoms that are unique and very hard to treat.

In the past three years, we have learned a great deal. Lexi is almost three, but is developmentally at about 18 months. I quit my teaching position to stay home and run Lexi to therapies and doctors appointments and I have loved every minute of being home with her and the twins!

We currently make three or four trips a month to the Cleveland Clinic, see a Help Me Grow therapist once a week at our home, and visit Blanchard Valley Hospital twice a week for therapy.

Lexi has since been diagnosed with 16 different conditions, so she is definitely a full-time job.

Lexi has taught us that we, as her parents, are her only advocate. We must stand up for her and what we feel is right for her treatment. We also have learned to look at the small blessings in life and celebrate each developmental milestone.

I have thrown away my “milestone” books that I used for my “typical” twins. Lexi’s does what she can when she’s ready! We have to go on her time frame and use an extreme amount of patience. She is currently learning to walk, putting everything in her mouth and throwing fits when she doesn’t get what she wants! We didn’t have the Terrible Twos, but we’re having the Terrible Threes!

We also have come to realize how blessed we are. First, we are surrounded by a loving and supportive community. From our church family, who threw a benefit for 800 people to raise money for Lexi’s medical expenses, to a family that steps up to watch the twins whenever necessary so we can run Lexi to upwards of 25 appointments a month. We could never have made it through the past three years without their love and support.

We also know how blessed we are to have Lexi with us. She has been a fighter from day one and has faced more procedures and surgeries than any adult I know.

She teaches us strength, endurance and unconditional love. It is definitely not easy to raise a child with special needs, but we know we are surrounded by wonderful therapists, some of the best doctors in the world and the most supportive community anyone could ask for. I think the phrase “it takes a village to raise a child” holds true even in today’s society, and we are so blessed for the “village” in which Lexi has been placed!

October 19-Cleveland CLinic tests- 1 for 2....we'll take it

We went to Cleveland Clinic yesterday for a swallow study, echocardiogram, EKG and appointment with the cardiologist. Lexi's Echo, EKG and cardiology appointment went really well! Both of her narrowings are still "moderate" and "acceptable." So, the cardiologist does not want to see her back for 9 months! Lexi also had a major growth spurt since her last appointment so it is really encouraging that her narrowings have grown with her so well!

Unfortunately, Lexi did not pass her swallow study.....again. This is the 7th one she has failed. I was pretty certain she would pass, but she aspirated two times in 22 swallows. She IS making improvements however. The Speech Pathologist is going to allow us to give Lexi regular water between meals to start practicing with thin liquids and we'll will try again with another study in 6 months.

Finally, we have decided to go ahead and try Lexi at Blanchard Valley Preschool starting November 1st. It is crazy to think that our baby is going to preschool and I am having a REALLY tough time with it! But. with all of Lexi's appointments and therapies (she has TWELVE this week!), we are going to just put her in preschool two days a week. We are VERY concerned about her safety so please pray that things go well! Lexi grabs food and other objects very quickly and puts them in her mouth and then usually pukes, she tends to fall a lot as she is learning to walk, and we are concerned about her getting other children's drinks and aspirating. We are meeting with all the Blanchard Valley Therapists tomorrow to discuss our concerns and come up with a game plan. I'm thankful they are being so understanding and accommodating!

Lexi is making HUGE progress in speech and she is saying something new almost every day. She is so much fun and we are having a blast enjoying her upswing in progress! Thank you again for your interest and prayers for her! I am going to post a story that was written for the Blanchard Valley School News letter in the next post. It helps remind us of how far Lexi has really come. She turns three on next Friday, October 28th and we are so thankful for another wonderful year with our little miracle!

Our Little Piggy Bank- October 2

It's hard to believe it's been 2 months since I last posted about Lexi Mae! The twins started pre-school a few weeks ago and I was convinced that THIS would be the thing I needed to allow my life to slow down a bit....or not (sigh). Here's the latest updates on Lexi!

Why the post "Our Little Piggy Bank?" If you haven't heard, a few weeks ago, Lexi started vomiting and eventual started to refuse to eat all together. After about a week of this, we got very worried. Unfortunately, when you have a child with multiple medical issues, you don't know exactly which doctor to turn to first! We called her GI doctor who said to talk to the feeding clinic, the feeding clinic said to talk to ENT and ENT said to talk to Neurology. FRUSTRATION! Finally, our neurologist at Cleveland Clinic, Dr. Friedman, took note! We are so thankful for him! He admitted Lexi to Cleveland Clinic because he was concerned that her chiari was having issues. After a whirlwind of being admitted, getting IVs started and a plethora of questions, one of the doctors said it sounded like she has swallowed something. So, off to X-ray we went (at 3am!!). Sure enough- a round, metal object lodged in Lexi's esophagus! So, first thing the next morning, the GI team came up to access her. Their main concern was that the object was next to her aorta and if it would tear through the esophagus, this would become a very serious situation. So, they scheduled Lexi for emergency surgery to remove the object. We were amazed at how quickly they moved! Within 20 minutes of talking to the GI doctor and signing all the forms, Lexi was down in pre-op! Turns out she swallowed a nickel. And yes, that actually gave us our money back :-)

However, last week, Lexi started having some similar symptoms so we took her to our local ER. Believe it or not, she swallowed another coin!! This one, however, is in her intestines and the doctors can't reach it. So, we are hoping she'll pass it on her own- otherwise (Dare I say it??)- it's back to Cleveland Clinic for more surgery! The doctors said we should find the little diaper surprise within a day or so....that was 5 days ago so a phone call will be made to Cleveland Clinic GI tomorrow.

In other news:
Feeding Clinic- after Lexi's last episode of nickel eating, she is down 9 ounces...not good! The clinic is hoping she will re-gain the weight so we don't have to put her back on more tube feeds during the day. They are also having us do some oral stretches on Lexi's mouth and cheeks to try to encourage nerve reintervation in her face.

ENT- Lexi is scheduled for a swallow study on October 18th. We are praying that she can be given the "all clear" to try thin liquids without aspirating!

Allergy- the best news is that Lexi passed a 4 1/2 hour food challenge for egg. She no longer has ANY food allergies which is a huge blessing! We're hoping being able to add egg into her diet will help with weight gain!

Development- Lexi has become a little parrot. She sings ALL the time and knows ALL the words to songs. You can't always understand her since she can't say "M," "B" or "P" due to her facial nerve damage but she is so cute! She mimics everything we say! She is not using a lot of words on her own, but we are really focusing on comprehension with her. She is continuing to work on walking with new foot braces and is becoming stronger every month.

Please pray:
That this nickel passes through Lexi's system without any more surgery needed! This little one has been through enough!

Lexi has a big transition meeting on October 19th. At this meeting, we focus on transitioning her out of Help Me Grow and into the school system (which seems crazy to me!). We are struggling with what to do with Lexi. We can move her to Blanchard Valley Preschool or we can keep her home and have a preschool teacher come to our house 1 hour a week. This is a big decision and we don't know which direction to go with Lexi. I'm just not sure I"m ready to send my little princess off to preschool quite yet! Please pray we make the best decision for Lexi!

Finally, pray for Lexi's upcoming swallow study on October 18th. Lexi has had 7 swallow studies in the past 2 1/2 years and has yet to "pass" one. This would be a HUGE blessing for her to pass the test!

As always, thank you for your prayers. We'll be posting some new pictures soon!

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!