Monday, March 30, 2009

Hello...My name is Jill....and I'm an addict...

I've learned something over the weekend.. I have an addiction... to my COMPUTER and the internet. You see, my laptop is very well loved and it's 3 years old. My kids have abused it a few times (read dropped) and it's seen better days. So this weekend when my DC jack (where you plug the computer cord in) finally gave out ----and my battery is also useless, staying charged for like 10 minutes---- I was sad. So I thought I'd take it to the store to see if they could fix it. Well, they could, for 250 dollars and they'd need it a week. Yikes! They recommended just buying a new one. I went home to talk to Steve about it. Well, we thought we'd see what a new one would cost, I'll just research it on the computer. OH, wait, it's BROKEN!!! Well, we'll just make some's online.... and my computer is BROKEN!! My hands were starting to shake and I was walking around the house aimlessly... what would I do with out my computer and the internet!

To prevent further withdrawls, Steve took me back to the store and helped me purchase a new laptop. (tax money came at the right time!) And I'm not super picky when it comes to my laptop. I don't need any fancy features. JUST internet service and a place to put my pictures.

Now the only dilemma---gotta get my files off of my old computer. I have a friend who works on computers, so I'm hoping I can pay him to do it, otherwise, Best buy would love to do it for me....for 100 dollars! Oh, they know that they can charge it because it's not like the average Joe can do it. So , knowing the pictures and files are safe and sound, I can take my time to figure out which way we'll get them off.

Oh, and the shaking has subsided :) Steve and the kids had a great time teasing me about my addiction, though!

Anyone else wanna join my support group???

Matthew had a neurology appointment today. Dr Wright was pleased that his seizures are essentially under control. She was pleased to see how alert and smiley he was. She had not seen him that was before. We are seeing some occasional myloclonic jerks; (these a like brief muscle twitches, not the infantile spasms he was having earlier) but no seizure activity! Yay!-- although she did make brief mention that he still could be having abnormal activity in his brain that is not exhibited as a seizure... but I can't worry about that, because there is nothing I can change especially if it's an assumption or a possibility. Overall I was happy with the visit. It's just always hard to answer the questions, any head control.....'no', rolling over.....'no', making any sounds like ma ma or da da.....'no'. Someday, those questions will get easier to answer...even if the answer is always 'no'.

Wednesday, March 25, 2009

Movin' on up!!!

Here's our latest picture of Matthew, sitting in his chair with some support. We're working SOOOO hard on head control.

Matthew is finally growing!!! We've spent the greater part of 4 months at 15 lbs. We'd go up a couple ounces, and then down a couple. It was frustrating and hard to see him fall off of the growth curve. We finally rented a baby scale this month. And switched his night time feeding to a new(uber expensive!) formula since he had blood in his poo (his stomach was bleeding, due to an intolerance to the formula). I'm proud to say that with more frequent breastfeeding along with a night time feeding to boost calories has brought him up to..........16 1/2 lbs!! I can't believe it! He feels so much heavier and stronger. And he's gaining at least an ounce a day. He'll be a chunky monkey before we know it.

Friday, March 20, 2009

Guess who's 10 months old!!

The cutest, snuggliest baby around, that's who!!

Can you believe it?? In two months we're be celebrating a whole year!!!
Worrying is like a rocking gives you something to do, but it doesn't get you anywhere
This was the best advice I got this week and I received it from my baby brother! (who's not such a baby..he'll be an RN in two months)
I didn't want to post anything about this until we knew more, but we had a bit of a scare this week. We drew Matthew's routine labs for his seizure medications on Tuesday. Wednesday morning I got two phone calls from two different physicians by 9:30. Seems Matthew's white blood cell count (which will be from here on out simplified to WBC) was 56 thousand. That is EXTREMELY high. Normal ranges around 5-10 thousand. WBC's are an indicator for a couple things. They are usually elevated during infection (Matthew is not and was not sick), and sometimes they can be a bit elevated due to seizure activity. Matthew's usually run around 15 thousand, due to his seizures. One other reason, (and there are not too many other reasons) is Leukemia. And both doctors had a very high concern that this could be our problem. His pediatrician had us come back in again on Wednesday and redraw just in case it was wrong for some reason. Wednesday his WBC's were 30 thousand. So still too high. She also sent this blood to pathology to determine if the cells were abnormal{indicating leukemia}. We drew lab work again yesterday, saw our pediatrician today and drew lab again today. The pathology results......NORMAL!! Thank you Jesus. I was terrified this week; absolutely terrified.. so a big weight has been lifted. His WBC's today were 18 thousand, so almost back to Matthew's normal. Why were they so high? We don't know. There is the possibility that Matthew had a large seizure we did not witness that could've maybe caused it, but we're not sure. Matthew's doctor is consulting a hemotologist (doctor who deals with blood disorders) to make sure that we're not missing anything, but she checked him over today and gave him a clean bill of health.
There is always drama at the Soldatke household, isn't there???

Thursday, March 19, 2009

Heard recently at the Soldatke's...

Mason: {running through the house at breakneck speed} "Hey Megan, come outside and see all the Naked Ladies!!!"

{Mom and Dad bust out laughing}

Mason: {stops and puts hands on his hips} Mom..{with as much sarcasm as a five year old can muster}.... the flowers! Not real naked ladies!

They never cease to amaze me!!

(in case your wondering, this flower below is called a naked lady. We have them popping up all over our back yard. Their formal name is amaryllis belladonna.. and there is your science lesson for the day! )

Monday, March 16, 2009

Spring is here!!!

Today it was a gorgeous 75 degrees and tomorrow promises to be more of the same. I wanted to take Matthew out today in his stroller for a walk, but he had decided that at 1 am he was up for the day and then crashed at around 1:30 and slept all afternoon {and I got a much deserved nap also as I had to participate in his wakefulness}, so we didn't get him outside today, but we're planning for tomorrow and I'll hopefully post some fun outdoor St. Patrick day photos!

These weird sleep patterns seem to pop up whenever we mess with his seizure medications. See, his epileptologist in Minnesota would like to have him off his phenobarbital, but every time we tinker with it, we get more seizures and funky sleep habits. He previously had had very few (like less than five) seizures between Valentines day and last week, so they decided to try to wean it again. I'm wondering if we should just leave it alone??? He is so sleepy though with everything he is on, I'd like to get some more wakeful times. I did talk to them again today and they told me to try some Melatonin to help him sleep tonight and hopefully get him back on track. I'm hoping so.

The kids are on Spring break this week, so we're going to try to do some spring cleaning, or at least go through there dressers and also do some fun things. One thing on the agenda: reading some good books. We're starting with this easy one:

We've already read "My father's dragon" the beginning of this year and this book is the 1st sequel to it. Very easy book. Probably 2nd grade level. It's an oldy. Copyright 1950. Cute innocence! My friend, Beth, said they were a must read and the kids LOVED the first one book! We'll probably finish this one tomorrow and I think Micah wants me to read one of the Narnia books next. This is what I miss most about homeschooling! We used to, everyday, curl up on the couch after lunch and I would read aloud a good book to the kids. It was our favorite part of the day. I can't remember how many times I heard "Just one more chapter, PLEEEAAASE, Mommy!"

Wednesday, March 11, 2009

You gotta watch this!

When you have 10 extra minutes, grab a box of tissues and watch this. It's WONDERFUL

Happy Birthday to my blog

My blog turned 1 year old yesterday. 1 whole year of documenting this journey. I can't believe how quickly time has gone. Thanks to Lisa who encouraged me to start a blog! I've met so many wonderful people, and it sure is a great way to stay in touch with all my family and friends!

Tuesday, March 10, 2009

Matthew and our blog are famous!!

Today I recieved an email from a representative from Benik, the company that makes Matthew's hand splints. They wanted to put our blog on there main page!! So click on these words that are blue and scroll down to "In the field" and you'll find us mentioned! Cool, huh!

Monday, March 9, 2009

Matthew's new things

I thought I would add links for the nubby ball and the bathtub that I wrote about below(click on the words below to go to coresponding website)

nubby ball

Primo bathtub


*original post*

As promised, I have some pictures of Matthew's new 'stuff'.

First is his tub. He has outgrown the baby tub I had for the other kids and by this time, my other kids were in the tub with the big ones. Matthew's head control is VERY lacking and he is unable to hold it up at all. In talking with Matthew's therapist, she recommended a bath chair. She brought one out that was very nice and I was ready to order it and probably at some point will still need it, but I was looking for something a little simpler for now. When I was reading through the fetal hydrocephalus website, Michelle had recommended a tub that worked for Owen. I emailed her to see if Owen was still able to use it (he's 2 1/2) and Michelle said he still fit nicely in it. She even sent me a link on where to buy it the cheapest. Matthew still had some baby gift money left, so I bought it. We've used it three times already and it's NICE. It's a bit big, but it will work for him for a LONG time. Here's a sweet picture of him, and yes, he is asleep. He almost always falls asleep during his bath.

The tub is called Eurobath by Primo and I believe they are only sold online

The next thing we've been using is called a light box. Matthew's vision is very poor, but can see better with lots of light. The vision specialist through the school brought this light box out with various toys that come with it. He really looks at box a lot when I turn it on. The toy in front of it is called a rainstick. I found this on-line also but I've also seen them in various special need toy catalogs. Matthew is very in tune to sound, so this toy helps him to know where to look and the outside of the toy is sort-of prism shaped which makes the light look really cool when you look at it. We also use a flashlight to light this toy up to help him see it. The next thing his therapists will do is to make an insert for his highchair so he can sit in it better and then maybe we can put the light box on his tray and he will see his toys better.

In this picture we're killing two birds with one stone. Matthew is doing tummy time and we're using the light box to encourage him to lift his head (or at least prop it on the boppy!) Sorry the picture is not good quality, the light box is really bright and my camera was having a hard time getting a good picture

And here is a close-up on the rainstick

The last toy we recently purchased (VERY cheap on Eb@y) was a nubby ball. I can't remember quite what words I used to search for this ball(maybe 'special needs bumpy ball'??), but it was less than 4 dollars-including shipping. And the company that sells these employs visually impaired individuals in Florida, so I felt especially good about my purchase. It has lots of 'nubs' on it so that Matthew gets lots of sensory stimulation touching it. Matthew does lots of sensory issues, so this helps with his hands a lot. I also roll it along his arms and legs, too. This ball, along with lots of infant massage, has helped 'desensitize' him, so to speak. Everytime we go to the hospital, he gets lots of 'negative touch' from all the procedures, blood draws, etc. that they do, so when we come home, I always have to work with him extra hard for a couple weeks to trust touch again. This last visit set him back especially and right now he still cries everytime I pick him up :( That is one reason I am SOO diligent about doing as few procedures as needed when he is in the hospital. We pay for it when we go home.

Finally, one other item that has been helping are Matthew's hand splints. His therapist ordered them for him and they help keep his thumbs out and not in a clenched position. They are called neoprene splints and they are made by Benik. He wears them mainly when he sleeps and then about 1/2 of the day. They are oh so cute on him!

Saturday, March 7, 2009

He's feeling better

Matthew sitting in his chair today

Matthew had such a good day and night yesterday. He fell asleep like magic at 10 pm (that's early for this little guy) and since we've been trying to get our little guy to gain weight (he's been 15 lbs since Thanksgiving) and now he has a g-button, we're giving him a continuous drip of breastmilk at night to see if we can boost his calories. He, in the past (when he had the tube in his nose) was not tolerating this feeding. Last night he slept like a DREAM!! and woke up VERY hungry at 8 am. I got to sleep for 10 hours straight! He has been delightfully awake all morning, as seen above sitting in his chair and playing with some of his new toys. I plan on doing a post VERY soon (hopefully tomorrow or monday) on the new things that we are using with Matthew , like toys and such. Hopefully they will be helpful to someone else.

Here's Matthew checking out his balloon he got in the hospital from his, I mean friend....Cayman

Thursday, March 5, 2009

Guess what????

We're Going HOME!!!!!!!!!!!!!!!!!!!!!!!

Wednesday, March 4, 2009

Things are looking up

Matthew is starting on the upswing on things. We is weaned off of his oxygen and they have taken away his continuous drip of pedialyte in his G-button. They drew labs this morning and his white blood cell count in still up. They also drew a lab(a CRP for my medically minded readers) that tells us about infection and that is actually up. They are not sure why because all his other labs tell us that the infection he has is viral. His 1st set of blood cultures came back saying that the bacteria they found was a contaminant (PRAISE THE LORD!!!) and his second set of blood cultures came back negative, so we were able to get rid of one of the strong antibiotics (vancomycin). He still has his IV (for fluids and the other antibiotic); but that is the only tube that we are connected to. He is opening his eyes a lot more and he is eating again at about 75%,so that is good.
I'm thinking we will be going home in the next few days. My dad has come down from South Dakota (Thank you Dad and thanks mom for letting us have him for a couple of days!) to help Steve out with the kids and make meals and such. That is a huge relief for me, as it's hard for Steve to do it all, especially when he's trying to start a business (which by the way is keeping him VERY busy, another THANK YOU praise). I hated to see my Dad drive so far, but it is a huge relief!
So basically, I think we're on the up swing. Hopefully it won't be long and we'll be home-sweet-home again {and this time for a LONG time}

P.S. sorry for the lack of pictures. I left my camera at home!

Tuesday, March 3, 2009

Last night, around midnight Matthew's nurse came in and stated that Matthew's blood cultures had 'prelimeninary' come back with 'gram positive cocci' in his blood. (that mean that he has bacteria in his blood....that isn't good). There is a possibility that it is a 'contaminent', meaning the bacteria came from his skin and not the blood. They will not know that until the specimen 'grows' more in the lab. We may know more as soon as tonight or maybe tomorrow night. Until then they have started Matthew on two pretty strong antibiotics. Which means that at 1 am we had to start ANOTHER IV.....and draw MORE lab work. That sort-of made for a cranky mama {okay, a REALLY cranky mama}. By the time they were done picking on him, it was 3 am. So, I'm really tired! I've gotten one nap today and I'm hoping to get another one.
The doctor came in and talked to us. We will get more bloodwork this afternoon, and see if the antibiotics he is on are strong enough. He is still on oxygen and needs to have it to keep his oxygen levels up. So it may be a couple more days or so before we get to go home. I'm praying that as his cultures grow out that they show it was just contaminated and we can stop the antibiotics. The doctor seems to think that it is most likely viral and not bacterial. We'll hopefully know more tonight or possibly tomorrow afternoon,

Off to take a nap.......

Monday, March 2, 2009

We just couldn't stay away

Well, I promised myself that it would need to be desperate circumstances before we went back to the hospital. Well last night, we reached those circumstances. Matthew has had a cough for a week or so, but it had gotten substantially worse on Friday/Saturday. Sunday, Steve called me while I was a work around 4 and told me Matthew had been asleep all day and now he was shivering, had a temperature of 100 and had just thrown up because he was coughing so hard. I thought the fever was funny, because he was on round the clock Tylenol due to the fact that he just had surgery on Tuesday and was still having pain. Steve called around 6 pm and said he had thrown up 3 more times since then from coughing and his temperature was 102. So I had him give him his Tylenol and told him I'd be home as soon as was off work shortly after 7 pm. He gave me a call at 7:15 on my cell phone saying he still didn't look good and his eyes kept rolling back in his head. I told him I was on my way.

When I ran in the door, I took one look at him and called his doctor. He was pale, limp and wouldn't respond to my voice. His temperature was 103. The nurse that I talked to told me to take him to the ER, and she thought we probably better drive to Children's'. So I packed a quick bag (I still hadn't completely unpacked from last week, so it took me 5 minutes) and out the door we went. When I pulled into the ER, I took him out of his seat and carried him in to the desk. I said, I have a sick baby; they took one look at him and grabbed him from my arms. They had me stay at the desk and give his admission information. When I got back to his room, 4 nurses and the doctor was around his bed. They had him stripped, weighed, EKG leads, and oxygen on him. His temp was 104, and his heart rate was almost 200. His oxygen saturation was in the low 80's. (You want it as close to 100% as possible, generally above 93% or so is good). They took blood from his finger and gave him a breathing treatment, did a chest xray, checked for RSV and influenza, They checked to make sure he didn't have a bladder infection. The doctor who did his G-button happened to be in the ER and he didn't think it was surgery related. They started an IV, drew more blood and ran blood cultures to check for infection. They also gave him an antibiotic in his IV. Each and every test has come back negative. That's good in alot of ways, but frustrating in some ways, too. I feel as if we're crying wolf. We come here and they can find nothing wrong other than he's very sick.
They admitted us and it looks as if we'll be here at least another day or so. He still has a pretty wicked fever and he's sleeping all the time. The IV they started blew shortly after we got to his room and several attempts to restart it failed. So they are running pedialyte in his G-button. He is keeping everything down and not throwing up. He is still requiring oxygen to keep his saturation's up. Today, he is fighting the nurses a little more (last night he didn't even cry when they catheterized him or tried to start an IV- he was completely out of it) and is waking up when he is hungry.
Once again, I'll keep all updated and I'm really looking forward to blogging a post that has NOTHING to do with being the the hospital.