Jase Hospital stay

Oh my I guess it is time for an update!! Lots going on over here and keeping us very busy!

Jase was in the hospital for 5 days last week. He actually was in 2 different hospitals..here is how it played out. So since his tonsils/adenoids removed he hasnt really wanted to eat much, he will drink anything. So I would just gently push solid food, aka mac and cheese, with really no luck. He was slowly getting sicker. After debating and debating if he was really "sick" or just feeling yucky, and should I take him in, should I not....sunday afternoon we took him to instacare.

Instacare told us to go to primarys, he was probably dehydrated. We went up to primarys ER and they drew blood to check. The dr was suprised on how dehydrated he really was because he looked "ok." So we would need to stay overnight to get enough fluids to hydrate him. It sucked, Jase just loves to watch barney, so he was ok with it. For the first day:)

He continued to puke and be sick through the night, so once we got him to keep fluids in we could leave. I ended up leaving about 3 that afternoon.

That night, feeling better, not 100% but thats a hard thing to tell with Jase anyway. He didn't want any dinner, so I just kept him drinking. He had a bottle and went to bed.

Next morning, I went to wake him up, (not usual, he is always awake before us) and he was so sleepy. Barely able to open his eyes. So I took him downstairs and tried to wake him on the couch. No luck. Lips were white and he was so lifeless. couldn't lift head off my shoulders. So I told Jeff, "somethings wrong I have to go." I jumped in car and raced to riverton ER. Saw a cop in the church so I stopped him and said something is wrong with my baby....and hoped he would escort me up. no luck. He said drive safe.

So Im shaking Jases leg in the car and trying to keep him awake. 3 min went by and He stopped opening his eyes. I freaked out, grabbed my phone and called 911. I said I am on my way to ER, I am speeding in the middle lane with my hazards on, my baby wont wake up, what do i do? Dispatcher was trying to get me to stop, or something....I really cant' remember. But in my rearview I see undercover cop following my in the middle lane and lights flashing. I told dispatcher to tell the cop I am not pulling over, I have to go fast. It really looked like a high speed chase. I was a flippin mess. I finally pulled over on Bangater highway. Ambulance was just around the corner and they came and took jase to ER.

ER scene was crazy and people standing around everywhere!! they seemed so unprepared. trying to get an IV in him, no luck and he is still "unresponsive" I remember looking at Jase asleep and tring to get him to wake up. I remember saying to myself, what if he doens't wake up and I didn't say anything...so I just yelled to all the people, "Someone help her!!! he is not responding...HE needs an IV, I dont care if you put it in his head FIND A VEIN!! and HELP HER!" It then seemed like people started to work. I called my dad and just said Get up here now and hung up.
A nurse said to me, you are handling this good. I thought, wait what? what does that mean? should I be bawlling? Is this really bad? Is this not going to turn out well? I was a crazy mess inside.

Anyway after about 20 min Jase came around and started to have a "look" back in his eye. The doctor came in and said how scared he was for a minute, and Jase has a blood sugar level of 35. That is really low. Really low. So once we get his blood sugars up he should be ok.

They decided to admit him and monitor how his blood sugar levels go, and do some controlled fasts for some genetic testing.

That hospitial was amazing, I loved everyone there, LOVED IT. (as much as you can love a hospitial!) Dr. Langston was awsome and very through. Jase sugars dipped again to 35 that night and rose to 365!

He left with a diagnosis of Ketotic Hypoglycemia. We basicly just have to keep him eating steadily and not to much sugars and no fasting.

Long week for us and It was so nice to know that so many people are willing to help. Seriously at a drop of a hat. They had dinners, rides, anything. We are so lucky to have people that love and care about us. There is not a day that goes by that we dont thank heavenly Father for you all! Thank you

Im sorry I didnt' update after our Neurosurgeons appointment. It went OK. The Dr. doesn't think the Chiari Malformation is causing any problems for Jase. That really caught me off guard. I thought for sure it was. Some of the symptoms are mobility issues for the lower half of body, low muscle tone, sleep apnea, voice issues, to name a few and Jase has all of those. He also said that there is probably no spinal issues. His theory is that since Jase is globally delayed, that this isnt' the cause. It is something else. The geneticist and neurologist need to figure it out. He said that he doesn't have hydrocephalus. Huh? Im so confused, the radiologist said he did....oh whatever. So no new developments there, and while I am glad there is no brain surgery, I just wish I knew more.

Jases new Gait Trainer

I have been so excited to get Jases new gait trainer. I can tell he wants to be mobile so bad. When he sees all the friends run through the house, his legs start to kick and starts grunting. He wants to play so bad! Jase loves to race Jordan from the couch into the kitchen. The bad part is, I have to carry him and race for him, as he kicks his legs. Those types of things tell me he understands more than I think he can. He is also leaning and looking for the basement to go and play. So I just knew he would be so excited and happy to be able to be more independent. As you can see, he was loving being one of the boys!

We are heading in tomorrow to have another hearing test. Friday Jase is going in to have tonsils and Adenoids removed, and a Bronchoscopy. (not really sure what that is :) He will stay overnight just for monitoring. We are removing the tonsils and Adenoids because they are growing rapidly and we think that is what is causing the Sleep Apnea. Im sure all will go just fine and we may get to now ditch the oxygen at night.

Overall Jase is doing so good, and is improving in many areas. Thanks for checking :)

mri results

The most important news of the day: JASE GIVES KISSES!! HE GIVES OUT THE BEST KISSES!! ooh I love them! now for more updates:



Today bright and early we had our 2nd MRI. I was so nervous/anxious to get some good information on whats going on in that head of his. I really thought there was no way we will not get the answers to these questions Ive had over the past 9 months. Jase was a champ and after fasting for over 12 hours, the biggest fit he threw was a couple moans and groans. He is the biggest trooper EVER!

I went in and had a nurse who sensed my frustration with this the whole thing and gave me some pointers on how to get some answers today. She was such a wonderful nurse, and I will never forget how she helped us. With my "head growth chart" in hand, I told EVERYONE we worked with how nervous I am, and I would be so grateful if the radiologist could come out and just say "yes more fluid, or no, no change." I didn't want to leave the hospital without that information. Every single person did what they could to help us.

As we were in the recovery room getting ready to be discharged, the radiologist came over and spoke with us! I was so excited!!! and I was ready to throw up I was so nervous. He started off saying that there was no tumor. Good, great. Then saying that the ventricles are enlarged. The left more so than the right. And there is hydrocephalus, but it is the same as the last CT and MRIs. My heart sunk. How could that be If his head is growing so much, so fast? He went on to say that there is something that is new, and it is very concerning because it was not on the 1st MRI. His brain is now being pushed down through the base of the skull into the spinal canal. It affects the lower extremities and mobility. It is called Chiari Malformation. It could be from pressure, but we are not sure. We would need to be referred to a Neurosurgeon to have them asses if there is any permanent damage to the spine and more than likely they will operate to fix the problem. My amazing pediatrician spoke with the neurosurgeon and they agree we need to get on this sooner rather than later. So Monday we will have a scheduled appt. to go and meet with the neurosurgeon to see the next step.

Jase is still the happy best little guy ever. He has a hard time keeping his head upright for more than a few minutes, its just so heavy. So he mostly plays laying down.

After all that happened today I still have more questions than answers, but I do feel peace knowing that we are headed in the right direction and we have Dr.s on our side that will help us get Jase healthy. I just hope that the neurosurgeons dont drop more bombs on us. We are thinking positive!!

Thank you everyone who is praying for Jase, and our family. We feel your prayers. Please keep praying for Jase. Thank you everyone.

HOLY GROWTH BATMAN!!

At our appointment today with Jases pediatrician, Dr. McCune was good. Dr. McCune by the way, has been so amazing through all this. He has been our biggest advocate in trying to get to the bottom of all this. He is more than wonderful and would reccomend him to EVERYONE! ok back to appointment.

I addressed his head growth, which I knew was alot this month becuase one day his helmet didnt' fit. Literally. Dr. agreed and showed me this new chart. The last two dots at the top are growth in ONE MONTH!!!

So that alone is very very troubling. I have noticed his eyes have been a little off. One side seems a little weaker than the other. The eyelid is a bit droopier, and he can't quite follow objects anymore.(his geneticist and physical therapsit noticed this recently) His eyes cant go from the very corner of his eyes to the other corner.

During therapy he can not lift his head off the ground when we are in the crawling positon. His head just seems to heavy at this point. He was able to do that 2 months ago.

He is not eating as much anymore.

His heartrate drops below 80. Dr. doesnt' seemed concerned with that. Great we will take it :)

His off the charts Periodic Limb movments.

With everything mentioned it seems like an MRI is in order. We will go in Friday morning at 6:30 am to have the MRI. This should tell us so much. I will know if this is a hydrocephalus issue, (which I hope.....) or if the mylination is still delayed. It will be a big day and hopefully we will have so many answers. I just hope they give us the results Friday, and not wait all weekend.
We also hope all goes well with sedation. It should.

Ill post results as soon as we get them.

Results, Results, and more Results......Kinda

Doesn't all that gear make you just want to jump into a comfy bed and drift off to la la land! Oh my poor baby! One day he will thank me when his head is nice and round! Well the helmet is pretty much to small by now, but we will get the official word from the Dr. this Wed. I hope we dont have to get another one! I am concerned that he is still on his back so much, all the roundness we have achieved will soon turn flat again. Stay tuned for the results!

We really have been so busy these past 2 weeks. It started with our Neurology appointment. Dr. S was nice and gave us some direction. She walked in and was quite impressed with how his head has managed to grow. (and not in a good way) She assessed him and was concerned about the lack of movement and how slow he is progressing. Also at how tired he seems to be. After all was said and done she left us with 4 options.

1. Slow developing Hydrocephalus. I looked at the MRI images with her and down the back of the neck where the fluid would drain into the spinal area was very narrow. That would be my reasoning pointing to hydro. Dr. S gave me the run down on how to handle the upcoming seizures that will be coming. (if its hydro). Like when to come to the ER, how long to let them last.... and signs that it could be hydro. BUT...we have had 2 CT scans showing no change in the amount of fluid, so its probably not Hydro. (or there would be more fluid between scans.) Follow me???

2. Overgrowth syndrome. His head is large, but that is all that would fit the overgrowth theroy. Typically kids are born large, (jase was not) large hands and feet, large bodies, (jase is short and normal hands and feet) So I'm thinking thats a 10% chance.

3. Nothing. Im not convinced that with all accompanying issues its nothing. (i really dont think she does either)

4. Deep breath......4....Leukodystrophy. She said "lets stay positive and we will come to that when it is time. Im not ready to start invasive procedures, lets wait and see what his body tells us" I, having a PHD in googling knew what Leukodystophy ment. It is not good, not curable, and is a degenerative brain disease. Dr, S said to be on the lookout for loss of skills. So we will be.

The day after Neurology we met with Genetics/metobolic clinic again to get some results.

Dr. Warnock gave us the results of the PTEN gene test, and it was negative. Although I was glad that Jase does not run high risks of cancers, I was thinking I would take that over Leukodystrophy. Nice options....huh. All the tests she ran earlier came back normal. That left me with more questions. Uggh. I am so glad that we are testing negative, but that only leaves more serious diseases to test for. She also said that she is started to look strongly at Leukodystrophy. Also she is testing for a Lysomal storage disorder, which is in the leukodystrophy family. It all sucks. and are crappy things. We should know the results of that test in a month.

The next day, I spoke with another geneticist over the phone who has run some tests for us. Lineagen. They are a wonderful company, and Rena was very helpful for us. She gave me some information of a blog of a family going through something similar to us.....Leukodystrophy. It seems to be everywhere I turn. It is so overwhelming to think the doctors see enough signs in your perfect child, to think he could possibly have a disease that will eat away at his brain until it puts him into a comatose state to die?.....in a few years?? What do I say to that?

Today we went to Physical therapy. Dawn is helping us teach Jase to get himself into the sitting position from lying down. We have been on that goal for 6 months now, with very little improvment. I am happy to report that Jase is bearing weight in his legs longer and longer each day! Dawn and Dr. S believe he will walk someday. Maybe with the help of a walker, but he is doing so good with his legs and standing. He actually has pulled himself to standing from my lap a few times! I get so encouraged when he makes progress! And most of his progress is social. He is such a social guy and LOVES LOVES music!!!!

We also had an appointment today with an ENT at primarys to find out what is obstructing Jases airway causing his apnea. His tonsils and adenoids are enlarged. The Dr scoped his throat and said overall it looks pretty good. He suggests we get Jase in and get those tonsils and adenoids removed and keep him overnight to ensure he recovers well. So more than likely he will undergo surgery next month. Hopefully that should get rid of the O2.

Tomorrow I have an appointment with our Pediatician to go over all these results and see if I can push for another MRI. and possibly an MRS. MRS looks at the metobolic side of the brain. (I believe, how it process things.) And bring up his low heart rate at night, it was dropping to the high 70's last night.

I will also be taking Jase to get his blood drawn for another test. The periodic leg movments, that were crazy high! So another fun blood draw. I hate those.

If you made it this long, have a cookie on me! You all rock and I am going to just keep posting things as they come up.......Like JORDAN PULLED OUT HIS FRONT TOOTH TONIGHT! TOOTH FAIRY IN THE HOUSE!

Jase my best little pal!

How stinkin cute is that face? Its like I can just see it going through his mind......"another test....really....Come on. Its getting old, but whatever give me a bottle!"

He is such a good sport. Really he is my little pal who is so easy going and the most mellow thing on this whole entire earth. Didnt' make a peep while they were putting all that garbage on him. That was for the sleep study.

He has had such a rough year of life. Geez it has been a doozy. Our most recent test was a sleep study. Sure enough he has moderate to severe apnea. He stopped breathing many times had over 232 periodic limb movements. (in 397 minutes) Less than 5 per hour is normal. So he is clearly not getting a good night sleep. Once we begin O2, Im hoping he will get stronger and able to work on those muscles and start moving around!

We also have seen many specialists to try and figure out why Jase is not well. He is very lethargic and it requires so much effort for him to move. His head is very large, the size of Jordans. and he nearly 5! Needless to say that is very concerning. Especially with the lack of milestones. He is able to sit, and roll. He can also get out of sitting into laying. That is the extent of his physical activities, not much for a 13 month old. He has been working hard for 9 months trying to learn to stand or crawl. We havent' lost hope he will someday!

Jases 1st MRI indicated he had a delay in mylenation (thats the mylen sheeth that surrounds nerves.) Also thinning of the corpus callosum. (thats the part that connects the right and left side of the brain.) Enlarged ventricles, and some empty black space filled with fluid.

From what we can tell as of today, the black spaces have filled in nicely. Thank goodness. We will be doing an MRI to see if the meylination catches up.

At a recent drs visit we realized Jase has a heart murmur. It is an innocent murmur at this time and hope to not have to add a cardiologist to the list of drs.

He has had 2 episodes of turning blue and not breathing. Not sure if they are seizures, but very very scary!

We see a geneticist to see if all these random ailments lead to one syndrome. We currently have a test out to see if he is lacking the PTEN gene. That gene is a cancer suppressing gene. So if he is missing that gene, he has extremely high chances of cancer, over and over. We pray it comes back negative.

Oh and how could I forget he wears a flippin helmet!! Im not sure how I can ever forget that ginormous thing! because his head grew so fast, and he is so inactive, it got really flat. So we have attempted to round it out. It seems to be working great, and should be out of that thing by next month. Oh ill be so happy to get rid of that thing you have no idea!

Jase has been the best thing ever. Even today the lady at ti pan said, "oh he is such an angel. I walked in and noticed him from across the way and thought what an angel! It is so true. He really was sent with such a special spirit. He exudes perfection and is so so so cuddly. Oh I love him so much!!

Thank you so much for all your prayers and support. We feel them. Please keep praying for him. We need all the prayers to help up get to the bottom of this mystery!

I will keep posting and updating this journey as we take it. And I will mention the other kids too!

Jase at Primary Childrens

Here is Jases brief stay at Primary Children's Hospital. We were able to get in and have an EEG done to see if Jase has been seizing. His EEG showed no seizure activity. Thank goodness for that! After all said and done, Jase should be just fine. Little guy has seen his fair share of hospitals, but we are done with that!

We are so blessed and love our family and friends so much!