Day 2 Power Wheelchair Trial

Well, today's high point happened this morning when we were at the St Louis Children's Hospital practicing with the amazing OT, Melanie Wood. We took Emmalin outside to practice. When we got out there, Emmalin did great but she tired out a lot quicker than yesterday. Melanie explained to me that she has been working really hard to keep her head up as much as she has while driving the wheelchair (because Emmalin normally hangs her head a TON), and so Emmalins neck could actually be sore from working so hard yesterday. Just like yesterday, going right is A LOT easier for her to do than go straight, but Emmalin did actually go left a couple times today (which was exciting). At the end of the time, Emmalin was really tired. We told her that she had to drive the chair to me and she could get out (being able to get out of the chair is a very big motivation for her). It took her about 5 minutes and she had several times she went is circles a couple times between times she moved the chair straight, but SHE DID IT!! Emmalin drove her wheelchair to me so she could get out! It was amazing!! She was exhausted when got to me and I got her out as fast as I could (and that made her happy because she hates being strapped down in her wheelchair). I was SO proud of her!!

Melanie said we need to continue to give her space that she can explore in the wheelchair, and that we also need to work on teaching her to stop (because right now she doesn't seem to care about the stopping).

So later this afternoon / early evening we went down to the parking garage here in our hotel to get some more practice in...unfortunately Emmalin ended up having a really hard seizure right before we left to practice and so she didn't do well at all. Poor thing!

We are hoping for just as great or a morning tomorrow and hopefully a more successful afternoon tomorrow as well. We are SO grateful we have been given this amazing opportunity and looking forward to see what tomorrow will hold!

God is great!

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First video of day one with the power wheelchair

Ok, so we are getting ready to go practice again, but here is the first video of Emmalin in the power wheelchair. So far she is starting to get the hang of going straight and right, but left is still very hard. I will be excited to see the rest of the week holds!!

God is good!!

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Well, Emmalin and I made it to St Louis. Tomorrow she will start her power wheelchair trial. Honestly, I don't really know how this is going to go, but what I can say is that I am incredibly grateful for Emmalin to have the opportunity to try it! If all goes well, we will be here all week. Tomorrow is supposed to be all about figuring out how to get the wheelchair into my van and then getting Emmalin "fit" to the chair. I'll keep you posted!!

God is good!


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Let the adventures begin!

Well, it has been a VERY long time since I posted anything on our blog (sorry about that)! Emmalin has been doing really well lately and so we have decided to move forward with some exciting things. I figure now would be a good time to start writing in our blog again as we embark on each new adventure these next several months.

First on the agenda, today Emmalin and myself headed to Columbia to get her evaluated by a speech therapist, occupational therapist, and physical therapist. We did these evaluations so that Emmalin could officially go on the list to be able to do an intensive therapy session (for OT session and a separate PT session) here at therapy services at the children's hospital here in Columbia.

Back in 2011 Emmalin had the chance to do a PT intensive at the Kenny Rogers Childrens Center in Sikeston, MO. We saw SUCH amazing progress within that time, but because of how much an intensive therapy session costs, we have not been able to get Emmalin back. The Kenny Rogers Center has amazing equipment and amazing toys and equipment for individuals with vision impairments like Emmalin (which are hard to find sometimes).
Although the Therapy Services department in Columbia doesn't have all of the "fancy" toys, it is SIGNIFICANTLY cheaper and that is what has made it possible for us to get Emmalin on the waiting list. We are SO grateful because Emmalin needs these intensive a to try to help her gain back some of her head and trunk control.

For those of you that don't know what an intensive therapy session is...an intensive therapy session is 3 consecutive weeks. Each week it is Monday through Friday and it is 3 hours (in a row) each day. The idea is that you focus on 1 skill the entire intensive therapy session. By the consistency and repetition of practicing that skill for 3 weeks, it is supposed to allow a person to gain the amount of strength (progress) within those 3 weeks that would normally take 6 months to accomplish.

We have been told that tentatively Emmalin will be scheduled for her OT intensive in October and her PT intensive in March of next year. Like I said earlier, now that the evaluations have been done they will be calling us soon with our official dates. We can't wait!!

Our other major adventure that we will be doing in a couple weeks is something that we never thought was possible. Emmalin has been given the opportunity to trial a power wheelchair. Yes, I know this sounds crazy! Our OT at the St Louis children's hospital (in therapy Servies) approached me and asked if we would ever consider doing a power wheelchair trial because she thinks Emmalin would do well and that it would give her independence and mobility (which is huge for a person that has to depend on others for SO many things)! So the first week of September, Emmalin and I will be in St Louis to give her the opportunity to trial this power wheelchair. Honestly, we are not exactly sure how it's going to go, but we are grateful for Emmalin to have the opportunity to try it.
Oh and I forgot to mention that our OT has mentioned that Emmalin will be activating the power wheelchair with her her head...at least that's the first way we will attempt the trial. As the trial happens, I plan on posting the progress each day. So stay tuned ;)

Between these evaluations today, the power wheelchair trial, the 2 intensive therapy sessions,
and the upcoming holidays (and Emmalins birthday) it is DEFINITELY going to be busy!! Of course one of the main goals during all of this will be to keep Emmalin (and myself) healthy! We are excited for a of these amazing opportunities and look forward to all of the possibilities that have the potential of making Emmalin's life better!!

As all of these adventures unfold, I will keep you posted!

God is good!!






This is Emmalin in the hotel asleep here in Columbia. She did great today during the evaluations :)

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Location:Columbia, Missouri

Day 4 (Tuesday) of the hospital admission

Today was an interesting day....first of all we weren't able to do a MRI bc of Emmalins VNS, so we had to do a CT scan instead.  

Results:  they said that they couldn't see a lot of the liver because there was still a lot of white chalky stuff that was still in her stomach from the upper gi that she had yesterday.  They also said that they did not see any air in the portal vein (which is good).  Then they came back and said that, of what they could see the liver, it looked normal.  

They also did a bunch of labs today and everything came back normal but one (all the liver functions came back normal).  The one that was "off" does show that something is going on, but now we are back to trying to figure it out.  

We will be doing some biopsies tomorrow around 10 / 10:30.  They also are going to checking closer on if her felbatol (which is one of her seizure meds) has anything to do with it.  Dr. Weisenberg (Em's epilepsy specialist) will be back on Thursday and so we will be going over stuff with her then.

She also seems to be starting to feel a tiny bit better today, but now she seems to be getting a little bit of cold symptoms, so it looks like that upper respiratory virus that she had is trying to finally show itself in Emmalin.  Let's hope it stays away long enough to get the biopsies done!!

Also, today she did not puke.  She didn't have very much food (Pedialyte only on a continuous feed of 10mL's per hour), but keeping any of it down is better than yesterday!! Emmalin seemed to feel a little better in the afternoon , but you could definitely tell her tummy is still hurting her.

I feel like we took a step forward today and that's a great thing!! Hoping for a good night (fingers crossed).

God is good!

Emmalin and then Emmalin and Jarrad at the CT Scan today.

Day 3 of the Hospital Admission

So Monday was an interesting and exhausting day.  Emmalin acted like she didn't feel good all night (nausea wise) and her little tummy just kept rumbling.  We went for the upper GI.  She did great (as always)and we went back to the room.  She had not puked all day on Sunday by they had been giving her a nausea medicine to help with everything. But Yesterday (Monday - day 3), Emmalin needed up getting sick (from both ends) 2 different times.  But They were both after the upper GI and so I as grateful for that!! They also decided that they wanted an abdominal ultrasound done. So after getting her all cleaned up we headed down for that. The idea behind the ultra sound and the upper GI was to be looking for reasons she was doing the main underlined problem (the puking every time I would get her to full feeds and then her puking the day I helped her go to the bathroom).  

I guess I should back up and say that in addition to everything else they have also discovered that she has two different viruses going on, one is called metapneumovirus (hMPV- which is an upper repritory virus - a common cold- that Emmalin is showing no symptoms of oddly enough) and the second virus is the rotavirus ( which will cause vomiting and diarrhea).  The doctors think that the excessive puking and diarrhea that Emmalin has been having is caused by these two viruses (especially the rotavirus).  They said it should run its course in about 5 days or so.  But they do not think it is these viruses that are causing the underlining issue of her vomiting when she's back on full food only when I help her go to the bathroom (this issue has been going on since the middle of January and she has lost 6 pounds because of it).

Then in the abdominal ultrasound they discovered that there might be something wrong with her liver (which was VERY unexpected because all of her labs have come back just fine in that area).  They think that they saw 2 different things.  The first one was that they liver was bumpy (which is called fibrosis) and the second thing was that the saw air in the portal vein (which is called serosis).  Neither one of these things are good and so they are going to schedule an MRI for tomorrow to look at the liver to confirm that the ultrasound was right.  They will also be doing a bunch of different labs to check the liver function among other things. I forgot to mention that they also sent Emmalin down to have some X-rays done to make sure she didn't have any air in her abdomen (which is a really bad thing to have).  They found out that she didn't have air in there and so we were grateful for that news!!

Then in the evening Emmalin ended up puking 2 more times.  She didn't hold down any food yesterday (and it was just Pedialyte).    Things finally calmed down, and we got to go to sleep.  Her night was better than Sunday night and so I am incredibly grateful for that!!

All in all, it was a busy day with a very unexpected twist in it.  I'm exhausted!  But honestly, I know there are a lot of kids in this very hospital That are A LOT worse than Emmalin and so we are counting our blessings!! Tomorrow is a new day and we are hoping it will be better!! 

God is Good!

Oh and on a fun note, Emmalin had some ballons and candy delivered to her from our very dear friends Amy and Lexi today.  There is a gift shop here at children's called Small World Gift Shop and Amy ordered it from there.  Another fun thing that people can do for kids that are in the hospital here is send little email messages.  I don't know exactly what it's called, but I think that it's neat they have that option also!!

These are the balloons and candy Amy and Lexi sent Emmalin :)

GI Issues - Hospital Admission

Well, we made it one whole year without Emmalin being admitted into the hospital (which is a great accomplishment). But this past Saturday (March 7th), Emmalin was admitted to the St Louis Children's Hospital (SLCH) because she was throwing up every 30 minutes. Technically Emmalin was taken by ambulance to our local ER (they have us take an ambulance because they - her doctors - don't want her waiting in the ER waiting room). This was Emmalin's second time to be take an ambulance from our house. The first time was last March when she got the Rhinovirus (which is a common cold but when Emmalin gets it her pulse of drops and she has to be given oxygen for a little bit). This was also the second time that Emmalin was transported from the ER to the St. Louis Children's Hospital. Emmalin is transported to the Children's hospital in St. Louis because this is where all of her 11 specialists are, her special team called the PACT team, and the CDKL5 specialist (that also happens to be Emmalin's epilepsy specialist / neurologist. Emmalin is also transported up there (instead of being admitted locally) because both Jarrad and myself want Emmalin to be where they already know her and where they specialize in kids (especially complicated kids).

Anyway, so Emmalin actually has 2 different things going on (at least that is what they think). The first issue of her puking every thirty minutes they think is some type of virus. The second thing is an issue that has been going on since about the middle of January. So far she has lost 6 pounds because she can't seem to tolerate / keep down her food (which is just a special type of milk). We saw Emmalin's GI doctor up here in St. Louis on February 19th and she decided to change Emmalin's food to something that was broke down a little more than the food she was normally on in hopes that it would help her stomach clear it quicker. So Emmalin went from Pediasure 1.5 to Peptamen 1.0 with Fiber. Emmalin did great with the switch and had stopped puking for about 2 weeks and then this past Friday night she started puking again. Normally she only pukes 1 time. It was because of the fact that by 1am she started puking every thirty minutes that we ended up calling the GI on call around 5:30am. Emmalin had never done anything like this before, and we were worried that the "normal" puking twice a week had turned into something worse.

Today is Monday morning (before any doctors have been in), and Emmalin should be going for an Upper GI today and then depending on the results of that, they may be doing another type of test tomorrow that will require a very light sedation.

When we got in here Saturday Emmalin would vomit every 30 minutes (even though there was nothing in her stomach) until they gave her some nausea medicine. Yesterday she did not vomit, but came VERY close to it several times. She had a couple times she had a burst of energy and she played with a balloon but got the most part she just slept. She FINALLY peed yesterday evening after holding it for about 28 hours.

Last night she continued to pee but seemed to be nauseas and stirred a lot. Plus her seizures were up a little, which is one of the main ways her body tells us when something isn't right.

So, we will see how today goes. Once she gets done with the upper GI then we will be able to start Pedialyte back up again. I will update again tomorrow.


Oh, one last thing I want to mention is that my family is amazing! My mom, sister, and brother in law Jon came with me and Jarrad to St Louis with us Saturday and stayed until yesterday. My dad (because they all had to go back for work - including Jarrad) is now staying a couple days so I have someone to help grab me food (or so I can go get me something), so I can go and do some laundry, and just so I can have some company. I am SO blessed to have them all!!

God is Good!!


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Location:St. Louis Children's Hospital

Above is Emmalin last night (Sunday night) here at SLCH. 

Below is Emmalin in the ambulance on the way to St. Louis.  Sorry the picture is a little blurry, but I couldn't keep my hand still long enough to take a picture without us hitting a bunch of bumps.

Below is Aunt Jessica (my sister) and Emmalin while we were at our local ER Saturday morning.