Saturday, September 8, 2012

Our Little Princess is GROWING!

I took Lexi to Cleveland Clinic yesterday- it was my first time taking her to Cleveland by myself (I've done Columbus a few times).  The wonderful thing about it is it means Lexi is making BIG improvements- no feedings required throughout the day AND she can play fairly well in the waiting rooms!  I have to admit we were BOTH exhausted by the time we go home, but we did manage quite well!

Lexi saw GI and she is a WHOPPING 32lbs!!  It may seem small for almost 4, but our goal was 30 pounds! She went above and beyond that!  We have been having SIGNIFICANT issues with Lexi's night time feeds.  She pulls on her feeding tube, which makes the pump beep, which means mommy or daddy come running, which means Lexi gets some interaction! (She's a smart little girl!!).  She is also still  in a crib and she is really getting too big (at 3ft, 3 inches) to be in a baby crib, but we simply aren't able to keep her hooked up to a feeding pump and allow her free roam- her tube would be pulled out every night I'm sure!  Two nights ago, her pump was beeping at 3am (which is common for the pump to beep multiple times as it gets pulled and twisted)... but this time it was wrapped around her neck.....TWICE! So, long story short... since Lexi has gained some weight, the GI Doctor was comfortable allowing us to take her off her night time feeds!! WOOHOO! We will need to get 24 oz of pediasure in her either via drinking it or a few bolace feeds (dumping a small amount of formula into her feeding tube all at once) during the day. BUT, we'll take it! Our hope is that within the next few months, we can do away with ANY feeds!! THAT would be a pure miracle considering we were told she may never walk or talk- let alone be OFF a feeding tube (but we won't get our hopes up quite yet!).  For now, we are just thrilled to not have to spend 15 minutes at bed time prepping her night time feeds!!

We also neurology and they are thrilled with her progress and the fact that she has only had 1 seizure since starting her medication.  The doctors would like to coordinate a day of testing for Lexi within the next month or so- the neurologist is concerned that Lexi may have more than just cranial nerve damage- he is concerned other nerves in her body were affected by her surgery (hence her incredible instability!).  So, they plan to do a full body nerve conduction study (EMG), a cardio MRI and remove her adenoids and tonsils to help with her sleep apnea.  This will take quite a bit of planning as she will need to be transported to 3 different departments of Cleveland Clinic while under sedation.  The ENT, Neurology and Cardiology departments will coordinate and schedule it all for us (YES- I LOVE Cleveland Clinic!).

We know Lexi is extremely delayed and anything but a "typical" 3 1/2 year old. BUT, for us, what is important is that she is making PROGRESS!  She is moving forward daily and we are amazed at the things she is able to do. I dropped her off at Blanchard Valley School on Thursday and she said "This is so much fun!" (which is what I tell her every time I drop her off because she usually cries).  She is a joy to be around and we are learning to take EVERY milestone (big and small)!

On a side note:  I (Cherie- Lexi's mom) was finally approved with our insurance company to see a brain tumor specialists at the Taussig Brain Tumor Center at Cleveland Clinic, which is another huge blessing!  (If you missed it- I was diagnosed with a small brain tumor between my carotid artery and my optic nerve in May). I'm working on finding the right specialists there and setting up an appointment for the initial consult, followed by Cleveland Clinic running their own testing. And yes- keeping up with both me and Lexi's medical expenses and appointments is definitely becoming more a full-time job than it was before! :-)

Please pray for:
Upcoming appointments for Lexi on October 8th with ENT and cardiology to work out all the testing.

For Lexi to gain tons and tons of weight so we can move her completely off a feeding tube and only to pureed foods

For the process of my brain tumor- pray that I am led to the right doctor!

Thanks again for your prayers- we are thrilled with Lexi's progress!

Wednesday, June 20, 2012

Yet another diagnosis

I just returned from a 10-day tour with the high school singing group I direct, but wanted to be sure to update everyone about Lexi's progress.

We took Lexi to Cleveland Clinic on June 7th for a brain and spine MRI and an EEG.  The EEG done at our local hospital was not done properly and 80% of the test was not even readable (but, of course, we had to pay for it!).  Lexi was a trooper!  She had to sit still with 36 wires attached to her for over an hour and then be taken immediately down to MRI and be sedated and placed on a vent to help her breathe. I never cease to be amazed at how tolerating she is of all of it and it reminds me to stop sweating the small stuff!

We walked in the door from Cleveland Clinic about 6:30pm and the phone rang.... it was Lexi's neurologist....that's never a good sign.  The good news: Her MRI has not changed- the chiari malformation is still at 6mm which is a praise!  However, her EEG showed some disturbing readings.  The neurologist is pretty certain Lexi has epilepsy.  He said the type she has (I can't remember the name of it after the last few weeks I've had) is fairly common in older children and they tend to outgrow it by their mid-teens. However, Dr. Frieman (the neurologist) said it is extremely rare to see this type of epilepsy in a child so young (Of course it is! Lexi can never be simple!!).  He wanted to do bloodwork immediately and put her on a strong medication for this condition, but also gave us the option of additional and more extensive testing, which is what we are choosing to do.  We would like to be certain this is what is happening with Lexi before we put her on such a strong medication that she could quite possibly be on for the rest of her life. 

So, we will be going to Cleveland Clinic July 6,7,8 and possibly 9th for 72 hours of constant EEG/EKG and video monitoring in the pediatric epilepsy unit.  This is going to be a REALLY long 3-4 days with a mobile child hooked up to all sorts of wires!  Fortunately, I will be able to stay with Lexi and Jon and the twins are going to try to get a room at the Ronald McDonald house.

Many prayers would be appreciated.  We are very saddened by this new diagnosis- our poor sweet baby has soo much on her plate already and we feel like every few months, a new condition develops.  It is simply exhausting to keep up with all of it on top of trying to sort through my own brain tumor.  My neurosurgery appointment in town is June 26th and from there I will be seeing a pituitary tumor specialist at Cleveland Clinic (assuming our insurance will grant us in-network coverage!)

Please pray for:
My appointment on the 26th for my pituitary tumor. The local neurosurgeon has taken a position with Cleveland Clinic (believe it or not) so if I need surgery, he will not be able to do it.  I would like to see a specialist at Cleveland but they are out of network. We pay for it for Lexi because it is worth it. However, we cannot add additional out-of-network expenses for my medical issues!  Pray that God will allow all the right people to come in to place so the insurance company will make an exception for Cleveland Clinic to be covered in-network for me.

Pray for our appointment with Lexi on July 6,7,8 and 9.  Please pray for patience for me and Lexi and creativity as I try to keep her entertained for 72 hours hooked up to all her wires! Please also pray that the results are more favorable than her first EKG at Cleveland Clinic.

Thank you all! We will keep you posted!

Friday, May 18, 2012

A Turn of Events

I wanted to post for those of you that read-up on Lexi and our family. We have had a small turn of events over the past weekend:
Lexi woke up early (4am) on Mother's Day and sounded like she was choking, she then started gagging and vomiting.  We spent about an hour with her and she finally fell back to sleep.  Jon let me sleep in on Mother's Day (because he's wonderful) so he got Lexi up.  When he went to get her up, he found her staring blankly at the wall, making gagging sounds and flapping her arms around.  He said he had never seen her act this way before.  He picked her up and she was completely stiff. So, he laid her on the floor until she "snapped out of it."  He then took her downstairs and came up to get me (with a cinnamon roll and juice for Mother's Day) :-)  By the time I got downstairs, Lexi was unable to move her left arm and was very lethargic.  So, I got dressed and rushed her to the ER (Happy Mother's Day right?? She also was EXTREMELY ill and almost hospitalized on my birthday! Someone please give this child the memo that this is no way to treat Mommy!) :-)

At the ER, the doctors were very concerned about her lack of response.  They did Xrays of her chest and abdomen and arm (they were worried she might have ingested something). They did blood work and a urinalysis. They did a CT scan (they were worried she had a stroke). They put in an IV because she was dehydrated. Lexi slept through ALL of that! The tests showed some elevated white blood cells and her electolytes were very off.  But, after more questions and evaluations, they admitted her and did and EEG early (like 6:30am early!) the next morning. 

We (Jon and I and the doctors) are pretty sure Lexi had a seizure.  She exhibited a lot of signs including a numb limb and extremely lethargic.  So, they called Lexi's neurologist at Cleveland Clinic and he double-booked himself to see her Friday (today).  Her neurologist literally schedules 4-6 months out so we were blessed that he got us in! We personally took him a copy of Lexi's actual EEG read-out (thanks to our wonderful hospital peds who had the EEG techs get us a disc before we even left the hospital!!).  The Cleveland Clinic neurologist is going to read the EEG and has scheduled and MRI for Lexi at the beginning of June (oh goody- MORE TESTS! And yes- I'm being saracastic).  Dr. Friedman (the neurologist) said that because of "whatever happened to Lexi's brain during her heart surgery" she is at an increase risk for developing seizures and went over with us what to look for and what to do if she has one again (we are PRAYING she doesn't). We will wait and see what her MRI shows and what Dr. Friedman sees on her EEG before moving forward.

This is very discouraging us.  Dr. Friedman told us that his seizure treatment program is a two-year process! Our poor sweet baby just can't catch a break! If Lexi goes 6 months without another "episode" and if the EEG and MRI show nothing of concern, we should be in the clear.... but that seems like a lot of "if"s to us.  Please pray that this was a one-time event and we will not have to add more to our sweet little girls plate!

On another note- I (Cherie- Lexi's mom) was recently diagnosed with a microadenoma of the pituitary gland. Basically, I have a small tumor just above my pituitary gland on my brain.  I have had 2 MRI/MRAs and was supposed to see a neurosurgeon today to discuss my options......until this all happened with Lexi. She most definitely comes first. So, my appointment was rescheduled for June 26th.  I get debilitating headaches some days and the medication I'm on makes it very hard to focus.  Please pray for some relief while I wait for my appointment and that I can be treated with medication and not surgery.

So, to some up the past month (when it rains it poors- but we believe that "blessings can come from raindrops" too!):
Please pray for proper diagnosis for Lexi in the next week:
1-Pray for her MRI- we wont know the exact date till next week because they will also do a heart MRI, MRA and remove her adnoids and tonsils while she is sedated for her brain MRI!! That involves 5 departments at Cleveland Clinic- Lexi is a rock star there!! :-)
2-Pray for my headaches and some relief from my tumor while I wait for my new appointment.
3-Pray for our budgeting skills.  I have literally received over 30 bills this MONTH- please pray for patience and understanding from the multiple hospitals and doctors we are trying to work with between me and Lexi's bills and that I find time to manage it all- the medical bills alone are a part-time job!!

Despite all of this, we are so thrilled with Lexi's progress.  When Jon came to get us from the hospital on Monday, she toddled down the hall and said, "Hi Daddy! I missed you!"  For a little girl the doctors told us might never walk or be able to talk- We'll TAKE IT!!! :-)

Thank you all for your continued prayers- it really is what helps get us through these tougher times. The love and support of friends (and those we really don't even know that well!) is one of our greatest blessings!

Wednesday, February 22, 2012

February 22, 2012- Has it really been 4 months??

Boy does time fly! I was talking with a friend tonight that I don't talk to very often and she said, "I try to stay up on Lexi's blog." yes! Lexi has a blog! So sorry to all of you that read this to follow up on our sweet little girl. I have a new phone and am putting in it to update her blog at the beginning of every month. It's a great way to look back when things are so hectic too!

Lexi's update:
Right now, Lexi is actually really sick. She had been doing REALLY well since her last rotovirus stay in the hospital at the end of October. Lexi has bronchitis and an inner ear infection. Unfortunately, when she gets respiratory infections, her pulse-ox (which should be between 98-100) drops really low. Yesterday it was running around 85. She has been to the doctor and we are doing round-the-clock breathing treatments, antibiotics and lots of fluids in a hope to keep her OUT of the hospital! We are hoping she wakes up a new little girl tomorrow- she has a lot of people praying for her!

Other updates:
Lexi started at Blanchard Valley Pre-school the 2nd week of November. She only goes Tuesdays and Thursdays because that's all mommy can handle her being gone! Plus, with all her appointments, it's all I can do to get her there 2 days! We learned at our parent-teacher conference 2 weeks ago that she has missed almost as many days as she has gone, but I'm not sure the school understands that Lexi has development AND medical delays. She is slowly adjusting and has finally stopped screaming and clinging to me when I drop her off- Thank the Lord! It was hard to leave her!! I think pre-school will be good for her if we can keep her more healthy!

PT: Lexi is crawling up and down stairs now- not sure if that's good or not! She is still very wobbly when she walks and this is a big concern for her therapists. We are trying to get her a compression vest to give her more stability when she walks but, of course, insurance denied it. I'm working on some grants to try to get this AND a therapy swing covered for her.

OT: Lexi finally knows what a crayon is! She is starting to make a few scribbles on paper even! This is very exciting! She doesn't always get the point down, but we'll take it! She is also into the "Dump and fill" stage....unfortunately, she only DUMPS right now- we need to work on the "filling" part! Jon alphabetizes our DVDs and Lexi LOVES to pull EVERY DVD right off the shelf. It drives Jon absolutely crazy and I think it's hilarious!

Speech/Feeding: Lexi is making HUGE gains in speech. She is probably using at least 30 words completely on her own WITH purpose! Unfortunately, she's still not able to use any sounds that involve lip closure- "m, b,p,v,f, " are all trouble sounds for her and that's a lot of our language. But, she is assimilating other sounds consistently- she says "dady" for baby and "nana" for mama. I understand her pretty well but others really struggle with understanding her. This is definitely becoming a big area of concern for us.

Lexi is still on a feeding tube all night but times like this when she is refusing to eat, we are actually thankful she still has a tube! We are making a trip to the feeding clinic on March 9th and are hoping for some good news about weight gain. At the Dr today she was 28 pounds- such a tiny peanut for 3 1/2!! But, she's tall and thin- perhaps she'll be a model! :-)

Please pray that we are able to find a way to get her therapy swing and compression vest covered as we are simply out of any other sources to pay for it!

Pray for Lexi's speech. Her facial nerve damage comes into play significantly and it is frustrating for everyone involved- especially lexi when no one understands what she wants/needs

Pray for our upcoming trip March 9th to Cleveland. We are actually going to Cleveland Clinic twice in March, Columbus Children's once, hospital pediatrician once and follow-up with regular pediatrician. We'll be back to our 5-6 appts a week in March and I'm really not looking forward to it. Pray for strength, answers from Drs and patience for Lexi!

Thank you all for your continued support of us and Lexi in this marathon!!

Wednesday, October 19, 2011

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!

Sunday, October 2, 2011

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!