Thursday, January 29, 2009

How did I go a week without blogging??

Hum?? I don't know. I guess we've been busy with the mundane. We had OT (occupational therapy) Tuesday, early development OT and speech therapy (we're working on bottle feeding) Wednesday, PT (physical therapy) Thursday and tomorrow we have speech therapy again. I also worked Monday, Wednesday and this evening. So really nothing new to document. Just lots of running around. I think I'm going to try to cut down on our outside therapies, especially since I feel like we're getting wonderful resources from our Early intervention therapists. Truly a Godsend. They come to our home, which is so nice. They are super knowledgeable and super nice too which helps. And Matthew is truly most comfortable with being in the home and he's worked with his OT since he was a tiny baby.(Not that he's not still tiny). So it just makes sense to simplify. I'm not quite sure how I'm going to do it, but I'll get it done.

Matthew is still doing well, he's smiling alot more. Not quite as much as last Thursday, but still happy. He still WILL NOT take a bottle, no way, no how. He also is not thrilled about baby food. Grr. Super frustrating for me. I really get tired sometimes of struggling for EVERYTHING. Just once, it'd be nice if something would just come. The other big thing we're working on is head control. He essentially lost all of the control he had worked so hard on, when he got sick after Christmas. I really want that for him. Head control will expand so many options; like sitting in a bumbo, sitting in a highchair, bathing in a tub vs. have to order a bath chair. Speaking of bath chair, we're getting to order one for him, and it sure is cute. We're just submitting it to insurance.

Okay, now I'm rambling. Time for bed.

Thursday, January 22, 2009

Happy day! and "pay it forward" project

Today was a very good day for Matthew. He was the most vocal and happiest I've EVER seen him. So happy, infact, that I took numberous pictures and a cute little video of him. I'm so happy for him. He's just a happy little dude today. Here's some sweet pic's. Sorry there are so many. I probably took 50 or so :)

Today, Matthew also had a swallow study. See, a couple of months ago, he started refusing to take his bottle. And we've had some slight difficulties getting him to eat baby food. The baby food issue is starting to resolve itself, but man, he WILL NOT take a bottle. Not for anyone, no how. I wouldn't be concerned, but I do work part-time and that makes it hard for Steve to feed him while I'm gone (translate that to he brings all 4 kids to my job every 4 hours while I'm at work, ugh for him).
Matthew did really well with the test. He did not aspirate at all, and even though he still wouldn't take a bottle; he swallowed really well and I think as we work on it he'll do just fine. As for the bottle thing, my personal opinion is that he has figured out that we put gross things in his bottle and he doesn't want anything to do with it. I think he's gotten enough medicine in a bottle to know that it's not for him. But that's my personal opinion. I truly think it's a sign of his cognitive ability. Maybe, just for once, this is something that he's doing that is 'typical'. And by that I mean that typical developing kids refuse bottles all the time, this may not be a sign of something bad. He just knows what he wants and thats momma!

On to the second part of my day. I've been wanting a new 'do' for a long time. I've also been contemplating how I'm going to 'pay it forward' with the contest that I won on Kristen's blog. Then I read a great post on Lisa's blog about locks of love. And it all came together. I was pretty sure my hair was long enough to donate, and it sure was. Kristen, I hope this counts! I'm hoping it will. And I had a great time getting a new haircut! And, I really love it, too! Here's some before and after pics.

Here's the before:



the after.....

The good news is that I have a huge pony tail that will be mailed off to Locks of Love and can be put to use in making a wig for a child.

And now; without further waiting, here is the cute video of Matthew. Pay no attention to the poor videagraphy and the annoying mommy voice on the camera. Just look at my sweetheart!The big red thing behind us is his therapy mat propped up against the chair, just in case your wonderin'.

Saturday, January 17, 2009

One year ago today...

....was a day that I will NEVER forget! This is a day that is etched in my mind, probably for the rest of my life. You see, 1 year today, Thursday, January 17, 2007 around 11:00 am, our whole family went to celebrate finding out if our soon to be 4th edition was a boy or a girl. Everyone was SO excited. I'd been counting down the days for at least a month. For some reason, I REALLY wanted to know the sex of our baby. Micah and Steve were sure it was a boy. Megan, Mason and I were sure it was a girl. We'd been bantering back and forth at each other forever, each insisting it was one or the other. Steve had taken the day off and we were going for Chinese later to celebrate. Steve, however, had spent the whole day and night doing his 'snow route' that he has because we'd gotten a ton of snow the day before, so he was exhausted. I still insisted he come and he could sleep the rest of the day in bed after our celebration.
We all showed up at the office and were ushered in to the ultrasound room. I work with the ultrasound techs and one of the nurses was a former co-worker on Labor and Delivery with me, so all were excited to see us. As the tech started the ultrasound, she put the wand on my belly and no sooner the kids hollered out, " what is it, is a boy or a girl?" I told them to be patient, we were just looking at the head. She took a few measurements and went and looked at me, took the wand off my belly and said, " Jill, I'm going to grab the Doctor, he's getting ready to go to a meeting, but I want him to look at these scans. His head is measuring much bigger than it's supposed to." I immediately knew. I don't know how, but when she left the room, I looked at Steve and said, " Our baby has hydrocephalus." Steve had no idea what that meant, but I sure did. The tech came back and said, okay, lets see if baby is a boy or a girl. She quickly found out it was a boy! The kids were so excited, they were distracted, thank goodness. She finished the rest of the ultrasound, and the rest is a blur. I don't remember anything other than the Dr. coming in to talk to me. He stated that our baby had hydrocephalus, that we would need to deliver with a different doctor, in a different hospital, without my midwife and most possibly have a cesarean. I was in shell shock. I'll never forget his words, "Jill, I think I know you well enough, you wouldn't consider termination, would you?" I quickly shook my head no, and later found out those were the only words Steve heard. He immediately perked up then (remember he had been up all day and all night- he'd been up around 30 hours) and listened to rest of what the doctor said. I remember trying to take it all in. I remember he said he thought I was taking it so well. I was in absolute shock!
Needless to say we left feeling numb. No longer hungry, we drove through a Chinese drive-thru because the kids were still excited for Chinese. We took it home and we sat in silence, barely eating. By then, Steve was exhausted. He went straight to bed, and slept till the next morning. I, not knowing what to do, just sat there. I sent the kids to play and stated we would have a day off of schoolwork. I immediately sat at the computer and spent the next 10 hours researching hydrocephalus. I, of course, found all the bad stuff. Things about babies dying, babies never getting to go home, horrid pictures. But then, I found hope. The first person I found that had a child with hydrocephalus was, crazy enough, some one in my own town who had just brought her baby home that VERY day! I couldn't believe it. On the WORLD wide web, I found someone right in my town! I immediately emailed her, and am so glad I met Sherri. She was the first of many wonderful people I call friends that I have met on the internet whose children are affected by hydrocephalus. The web has been the best source of information and support.

I remember going to bed that night and crying myself to sleep. I just sobbed and sobbed. I had only told my mom so far, and I couldn't bring myself to call anyone else. I just sat all by myself. The next day was worse. I cried the whole day. I was a wreck! I felt so bad for the other kids. They had no idea why I couldn't even talk without crying. People started calling, wondering how my ultrasound had gone. I retold the story numerous times that day, crying harder each time.
Shortly after, our family and friends rallied round us. They lifted us up, and supported us through the next few difficult months. In February, I found the website that gave me so much hope. From this website, we found out about stem cell infusion for hydrocephalus and decided we would do this for our baby boy. I found Lisa's website and Kristen's website and a message board on I spent the remainder of my pregnancy educating myself, spending endless hours on the internet. I worried, prayed and tried to prepare for the unknown. I tried very hard to enjoy the rest of the pregnancy; enjoying frequent ultrasound pictures of my little man.

Matthew will be 8 months old soon! Time has really gone fast. Some days are really hard, sometimes I still let myself get in the dumps. But, Matthew is a joy. He is sweet and cuddly. I love him to pieces. Sometimes I'm very sad he's not developing "typically". But, I have to remember he's going at his own pace. And God made him who he is. He is who he is. And, he's forever changed our lives.

Thursday, January 15, 2009

Matthew's 7 month pictures, a little late

We took Matthew to the Studio the other day to get his pictures taken. I just wish we could get him to smile for the camera! He smiles a lot now at home, but not for the camera. Maybe he's just shy! :)

Tuesday, January 13, 2009

And the winner is....

Congratulations to the Rogers family! Steve picked from a very great list of ideas!! Thanks everyone for helping us out! We loved your ideas! Steve has picked the name 4M Auto Repair. And 4M Auto Repair is up and running!!
Now my top 3 favorites were "One Man and a shop", "Mr. Mechanic", and "4M Integrity Auto/4M Auto", and since Steve had the final say, he picked 4M Auto Repair. We we be in contact with you Jeff and Cindy to figure out where you would like your oil change done. And we are giving a special 'honorable mention' to Kim (my sister-in-law) on starting the "4M" idea. But you must share with your wonderful hubby! Be watching your mail Kim for your icecream!!

On a side note, one of our good friends, Brenda, thought it would be funny to name his shop 'blue light special auto' since his shop is in the old K-Mart building here in town. I thought it was VERY funny, but Steve didn't quite find it so funny! He, he!

Sunday, January 11, 2009

My first blog contest

Okay, time for all of you to participate in my first (maybe only??) contest. Steve is very seriously working on starting his own mechanic shop. He has a building and is working on getting everything lined up. But in order to take the next step, his business needs a name. We don't want the generic 'Steve's auto shop' or 'Soldatke auto repair', but we can't get our creative juices flowing. So this is where you all come in. We want you to try to name Steve's shop. Leave your 'shop name' in the comments section (if you use the anonymous option, make sure you sign your name)and if you win, there is a prize!! If you're local, it equals a free oil change in Steve's shop. If you're not, we'll make sure you get the equivilent in your area. So go ahead and get creative!!! Contest ends Tuesday night.

Wednesday, January 7, 2009


We're glad to be home, that's for sure!! Monday, I didn't update, but it was a pretty uneventful day. They drew some blood (got it in the first poke, thank you Diane the lab tech!), and the hospitalist and residents rounded. This time around we had really great residents, no troubles in that area!! We basically worked on feedings on Monday. Matthew literally slept all day. I would rouse him to eat, he would oblige and then fall asleep again. Crazy boy, he was pooped! Then in the evening the neurologist came to see him. My blogger friend Sheri, has given this Doctor his very own blogger name, which is Dr. Blank(pun intended), and we have both had experiences with him. And as luck would have it, Dr. Blank came on call for this week. I've since talked with Matthew about checking the call schedule of neurologists before he decides to get sick. :)
Dr. Blank, took a very long history, which he did not even SLIGHTLY remember us from before, and after much contemplation at the nurses desk with the 2 neuro. residents he brought in, he agreed that he didn't know what these movements were either and we weren't going to do anything different. He also didn't know why one of the blood tests (previously ordered by a different pediatric neurologist over the weekend) was elevated, but thought it best to repeat it in the morning. What an earth shattering experience!! (Ooh, I'm feeling a bit of sarcasm, yikes, on to a new topic).
Monday night he awoke on his own to feed and Tuesday morning they pulled the NG-tube from his nose. We were happy about that. I talked via phone with Matthew's pediatric-neurologist in Minnesota around lunch and he decided that since this activity was not seizure that it would be best to continue on our plan of reducing the phenobarbital, since we had seen such positive signs of him wanting to interact once we had decreased it. He thinks these 'events' (eye blinking and muscle twitching) may go away once he feels better. I want to tell you how much we LOVE Matthew's neurologist in Minnesota!!! I wish he were closer!
By afternoon, we had gotten more blood (on the first poke, again thanks to the same lab girl) and had gotten clearance to go home. And I was ready! Our bags were packed and we were out the door, faster than you can say!
On the docket for today; 1) clean my house. My wonderful hubby is not so talented in this area, so not much has been done while we were gone. I'm scared what I'm going to find in the kitchen.
2)Take down the Christmas tree (been up way too long)
3) Dr. appointment at 1 pm with the pedi. endocrinologist. I'm sure more blood work.
4) Therapy for Matthew today in the afternoon! We've been off for a couple of weeks for the holiday and we need to get working again! We have milestones to meet, ya know!
5) A good rousing game of Wii fit in the evening. Guess what I got for Christmas???

Tuesday, January 6, 2009

We're going home!!

We just got the go ahead to go home, I'll update this evening! Matthew is doing so much better, he's awake and cooing. It was like a complete turnaround this morning. He's still not 100 percent better, but awake and hungry is good! His cough is still pretty 'rough' sounding, but he's handling like a trooper! Hoping to be gone by 3 pm!

Sunday, January 4, 2009

So far today....

The resident, hospitalist and pediatric neurosurgeon have been in to see Matthew. Matthew did sleep all night long and still has not awoken, even with various pokes and prods from the doctors. He stirs a bit but then sleeps. No one really seems to know what is wrong. He definately has some sort of URI (upper respiratory infection), but if/what else is going on no one knows. The pediatric neurologist seems to think the eye movement and neck muscle twitching we've been seeing is NOT seizure activity. He felt that since we've looked at everything else, it was now appropriate to tap his shunt to look for infection. I was and still am scared to DEATH about this. Tapping the shunt does come with the risk of infecting the shunt just by nature of introducing a foreign body. So, PLEASE send prayers heavenward for protection from infection. That is the LAST thing Mr. Matthew needs. I've always been more scared of them tapping his shunt than anything else. The fluid that came back from his shunt looked clear, not cloudy, so the probability is no infection, but we will have to let in grow in the lab for a while to make sure. It was a very quick procedure that he did not even flinch with.

Matthew, as I said, has not woken up at all, really other than being picked on yesterday, he slept. He is one sick little baby. At this point, I can't even awaken him to eat. They are putting his feeds down his NG tube and hopefully he'll be feeling well soon.

The neurologist has also been in contact with the neurologist on-call for Matthew's neurologist in Minnesota, and they want us to do an EEG and some more blood work today. Matthew's neurologist in Minnesota, Dr. Doescher will be back on tomorrow and we will consult with him then.

I will update more today if I know more, but that is what has happened so far. Steve will be up soon, and he'll be able to see Matthew and spend some time with him.

Saturday, January 3, 2009

hi ho, hi ho, it's off to Omaha we go

Well, we can't seem to keep ourselves out of the hospital. Matthew's seizures/episodes have gotten worse, and somehow he caught a cold. We don't take him out very many places ever, in fact I can't recall taking him anwhere this week, and no one at home is sick, so it baffles me where he got sick. We are very diligent about keeping him away from sick people, although a cousin of Matthews was sick over Christmas that we didn't exactly know about till later, but I don't know if it could be showing up a week later???? I think a combination of the two (seizures and cold) has depleted Matthew's energy and he doesn't want to eat, or wake up for that matter. So with the combination of seizures, temperature, sickness and general not eating/sleepiness, we decided to take him to the ER. He immediately got a breathing treatment, RSV test (which is negative), CT scan (normal), shunt survey (normal), chest xray (normal), lab work (all normal and his seizure medications theraputic) and 10 (yes 10) IV pokes, none of them successful :( . ER decided it was best to admit us and try to figure out what's going on. So his shunt is working and his meds are good, so who knows WHAT is going on. They decided it was best to give him an NG tube to give him extra food and liquids to try to boost his intake a bit. Steve was going to bring some breastmilk from the freezer to give him overnight, but the roads are really icy and he doesn't want to risk coming up tonight. So I'm going to try to pump some inbetween feeding him so he has milk to put in his NG tonight. They will be giving all his meds in his NG tube along with an all night drip feeding. Hopefully he'll be feeling better in no time. The on call neurologist will come see him tomorrow and ordered an EEG for Monday.
In anticipation of having to stay, I did pack a bag and my favorite companion laptop, so I'm set for a day or two. I will keep all updated.

Friday, January 2, 2009

Happy Birthday Curtis!!

HappyBirthday to my 'baby' brother!! He's a great brother and uncle! He graduates in May with his nursing degree. He's always there when I need him. And my kids absolutely love him!
Side note: I'm taking applications for a sister-in-law :)