Monday, March 19, 2012

St. Patty's Day

We had been promising Jacob for weeks that we were going to the St. Patrick's Day Parade. He knew that his friends were going to be there and he even got special "parade socks" from Nonna. When Brenna got sick we knew that we really need to be able to take him if at all possible. We knew Brenna would not be in any shape to go so we were lucky and were able to get babysitters we trust to come to our house and watch her. The day started out fabulous.. warm and lots of green! It ended VERY VERY wet!! But here are some pics of the fun!

One of my (and Jacob's) favorite little guys.. Daniel

The traditional St. Patty's Day picture with Aunt Nicki. I think this may have been our 10th or 12th annual picture like this.. are we really that old?

Trying to get a picture with my little man. He didn't want any pictures..
Even Aunt Nicki couldn't get a good picture with her godson :(

Adorable Warren kids!

The sista's.. Me, Brittany and Nicki.. where was Kolleen.. oh yeah.. on VACATION!!

The neighborhood boys waiting for the parade to start

FINALLY!!! A good picture!!! He was so happy!!

Jacob with the Warren kids.. I think they are contemplating making a run for it with the cooler!

After the parade, all of our neighbors and the Warren's came back to our house to play. Brenna was so excited to have some friends over but was also very exhausted by the end of the night. We spent most of the weekend relaxing after Saturday!


After a few requests I decided to jump straight to the post on Brenna. Brenna starts acting sick in mid February. I went out of town the last weekend of February and she started to run a low-grade fever while I was away. At that time, it was normal sick toddler things. She was getting lots of TLC from Nonna below.

A few days later I decided to take her to the doctor. Originally I was just taking her in for what I thought was just crabbiness and not sleeping through the night. However, as I waited for the doctors office to open in the morning I noticed she was falling a lot. By the time the doctor opened at 7am she had fallen several times and had a very large knot on her head.

We went to the doctor later that morning and we learned she had double ear infections and strep throat. The doctor was saw, not our normal pediatrician, did a quick neuro exam just to be sure all was okay and sent us with an antibiotic. Honestly, we didn't think much of it and I thought the ear infections explained the falls. That was on a Tuesday.

Over the course of the next week we thought she was doing better but then towards the weekend thought the antibiotic may not have been enough and contemplated taking her back in. On Monday of the following week (this was now March 5th) I was putting Brenna to bed when she had what we now know to be a "seizure-like" episode. Immediately I became very worried, especially when we could not wake her after. I called the pediatrician and they advised to take her to the hospital since she did not have a fever.

We took a toddler at bedtime to Mercy Children's as quickly as we could. When we got there we almost left thinking there could not be anything wrong with her. She was acting fine and literally running all over the ER. After being triaged we were seen by a few doctors and got a neuro consult. We learned very fast that we wouldn't be going home anytime soon. That night they did a spinal tap, blood work and a CT of her head. Everything came back okay but the doctors just didn't feel that everything was okay so we were admitted. We did learn that she still had the ear infections but that was small news in comparison to other concerns.

The next day we saw the neurologist. He did a very long exam on her (which was not easy because at this point she really hated everyone in scrubs and a white jacket). The neurologist strongly believed she had post-infectious acute cerebellar ataxia. However, there was lots of things to rule out first to make sure there was not something else going on. That day she had an ultra-sound of her tummy, a chest X-ray and a sedated MRI. The next day she had a sleep-deprived EEG - yeah that was not very much fun at all! The best news of all was that everything came back clean and they were pretty confident that she did have the original diagnosis. However, we took home a very scared 17 month old who could no longer even stand much less walk. The next few days would be very long days.

Acute Cerebellar Ataxia has been described as an infection in the body where your body doesn't fight it as it should. Instead the cerebellum area of her brain got damaged and is now swelling. The cerebellum controls core body functions as well as balance. This is why we started noticing her falling weeks before she had the seizure-like episode. We were told that 2/3 of kids do not recover entirely so we were hoping like crazy that she was the other 1/3.

The day after she came home, we took her to the babysitter. The neurologist had warned that if we waited for her to get better we would be waiting months so we needed to get her in a routine if possible. However, within a very short time of her being at the babysitter she was getting sick. Nonna was able to go get her and stay home the rest of the week. This helped tremendously!! She was able to get some of her strength back and was able to rest a lot.

We decided to seek a second option neurologist at this point just to make sure we were doing all that we should be. The second option neurologist, "Dr. M" has become our primary neurologist at this point. He has a better prognosis than our original neurologist and he also has suggested things we can do help her chances. Since we first met with him last week we have already enrolled her in the "Little Gym" and will also enroll her in swim lessons. The goal with the extra therapies will be to assist in strengthening her core. While we were visiting Dr. M he also noticed that she has some respiratory issues. We have known for a while that Brenna passes out when she gets upset and she can get to that point easily. The dr had concerns over the health of her heart given how quickly she can turn ash colored. He immediately sent us to a pediatric cardiologist and we had an EKG and an echo cardiogram. So far we have the result of the EKG and it was normal.

On top of all of this stuff, Brenna was also in the middle of the process of getting tubes put in her ears. We will be holding on that surgery and the possibility of removing her tonsils and adenoids until she had recovered neurologically. Also, we have concerns about her ability to undergo anesthesia at this time. When they did the sedated MRI, they ended up needing to intibated her and we need to take that into consideration as well. We met with the ENT today and we all agree she needs to wait at least 8 weeks.

Here are some pictures in the hospital...

Getting some TLC from Daddy

Not happy at all to be there

Now we are talking.. off of isolation and watching Minnie while on a wagon ride!

Loving her baby that giggles from the Warren's

As for Brenna's day-to-day personality right now: She has gotten a lot better over the last week. She now wants to walk again and is wanting to walk everywhere. She still is having some balance issues and is getting lots of bumps and bruises but really is a "determined" aka stubborn little girl. She had seen lots of doctors and has a general hatred for all of them. We do expect her to be one of the 1/3 kids who recovers completely. We are doing everything we can to help her do that too. She will be getting some extra therapies and things to help her as well. We do expect this to result in more developmental delays but things we should be able to manage. For now, she is happy (when not at the doctor) and tires very easily but we are glad to have her home. The goal being that each week we look back and it is a little better than the week before.

I will keep this updated as much as possible as we continue down this path of neuro that we have not been down before. Please continue to keep her in your prayers and we thank everyone for all they have done: the meals, phone calls, texts and offers to help are overwhelming!

Sunday, March 18, 2012

Coming Up Next

I will do my best to add March updates and most importantly, and what everyone keeps asking me to post, is the updates on Brenna in the next day or two.

As many know she has recently had another set-back and was in the hospital. I will update details and prognosis, as much as we know, as soon as I have an opportunity.

Thanks for all the prayers, e-mails, calls and texts. I promise I will get something posted shortly with the details!!

February 2012

In February we were lucky enough to get to go to Branson with Matt's siblings. It's a great weekend for the cousins to all play and the adults to hang out. This year only 2 other of the families were able to go but we had a good time and can't wait for next year. Here's a few snapshots into our weekend!

My Spider man Jacob!

The kids hanging out with 2 of their KC cousins

Brenna having some fun with balloons

AND then the highlight for the dads..

Snowball fight with Marshmallows!

Action shot with Matt and Uncle Tim.. notice Jacob having the time of his life in the corner. He still asks when we can throw food inside again!

Matt - very serious!

Uncle Pat

Jacob having SOOOO much fun!

This has nothing to do with our weekend but more about how my house generally looks when the kids are awake.. do you think they have enough toys?

January 2012

Apparently I didn't take a lot of pictures in January. Of course one of the biggest days was Jacob's birthday and I do have plenty of pictures from that. We had his birthday party on New Years Eve so that Uncle Ryan and Aunt Terri would still be in town. We all had a great time and were thankful that so many of our friends and family could rearrange their plans and attend.

Jacob wanted a fireman themed birthday so that is what he got. He, on the other hand, did not get the ipad he really wanted. This is the homemade fireman cake I made for the special occasion.

Brenna really enjoyed all the paper left from the presents!

BIRTHDAY BOY! I can not believe he is 3!!!
Aunt Terri with Jacob

After many people left the Warrens stuck around for the night. Somehow we thought putting in the new movie Jacob got for his Birthday, Monsters Inc, was a good idea. Clearly it was not!

Reese, Jacob and Daniel watching a different movie. These kids are have so much fun together!

On Jacob's actual birthday the Warren's were again about to help us celebrate. Here are Jacob and Daniel having fun at the small arcade at the pizza place. I love these boys so much!!

Jacob with his godparents, "Uncle" Brian and "Aunt" Nicki Warren

We are so lucky and are surrounded by some pretty awesome people. Our other good friends thought it would be nice for Jacob to come home to a house decorated. They even decorated his room!!! Thank you to "Uncle" Steve and "Aunt" Crystal Pini - it did take me and my mom about 10 minutes to convince each other it was not the other that actually decorated the house.

This was outside Jacob's door.. he was way beyond excited that so many people did nice things for him on his birthday!!

On his actual birthday, Jacob received his first Harley.. as you can tell he loved it!

For anyone wondering.. we do make him wear a helmet on a normal occasion. However, given he wouldn't even petal at first and was in the house we were okay without it.

Blowing out a candle on his actual birthday.. I really do have a 3 year old :( Our little man is growing up.

We also were lucky and got to celebrate Colin's birthday with the Beffa side before he headed back to Germany. Here is a picture with some of the Beffa cousins.

December In Fast Foward

So here I am in mid-March trying to catch up since December. One thing I was really going to try to stay on top of in 2012 was the blog. So here's a quick update of each month.

To finish December, here are some holiday pictures.

Here is the gingerbread house that Jacob made with Nonna. I believe more chocolate made it in his tummy than on the house.

Everyone in our house got very sick the weeks before Christmas. Poor Jacob got it twice and Brenna was very close to hospitalization. So when it came time to visit Santa only Jacob got to go. He was so adorable and actually forgot to ask for anything for himself because he was so worried about Brenna not seeing him and wanted to make sure to let Santa know she was sick and wanted a little piano. He LOVED Santa this year (obviously).

Jacob so happy to take his picture with Santa. He was very concerned on our way out of the store about where his sleigh was parked.. on the roof of course!

Jacob making cookies.. boy was he messy.

My attempt at a picture of the kids in their Christmas outfits.. didn't turn out so well

Family Picture at my grandma's house

Both kids with their toys from Great Grandma Bayerl

Jacob coming downstairs on Christmas morning. He was SOO excited!

We were lucky that Uncle Ryan got to come home for Christmas. He spent about 2 weeks with us and Jacob and Brenna loved every minute. Ryan was supposed to go to Afghanistan next but his mission actually got cancelled (we were very lucky) so he is back at his home base in Las Vegas.

Christmas Morning playing with one of his toys

The kids got this house as a Christmas gift. They both love it. I'm not sure why Jacob is bundled up for winter snow.

Close up of Brenna - she is getting so big!

We were also very lucky that Matt's sister and family got to come in town from Germany. Here is Brenna and Colin playing.. they loved going round and round this toy!

Lots of my favorite little men.. Jacob, Colin and baby Cameron

Brenna and Jacob in their PJ's

Uncle Ryan and Jacob listening to some tunes