New diagnosis of sorts

For the last 1-2 weeks or so, I've noticed some new things that Matthew is doing; neurologically that is . I've noticed that he has started having seizures again, although not as many as before. I haven't seen him smile in over 2 weeks and his sleeping patterns have once again worsened. By worsening, I mean that I am getting VERY little sleep at night, AGAIN! Matthew tends to be up late and then wakes frequently through the night. The biggest thing I've noticed is some weird leg jerking. As soon as I saw it, I knew what it was. I forced myself not to believe it though, until I talked to the doctor. Neurology is not one of my favorite areas in Matthew's care. I don't ever feel like things are handled in a timely fashion. Now, that may be an incorrect assessment; but I'm not used to this 'wait and see' attitude. If I see something abnormal, my expectations are to have the testing done within 24-48 hours and see the doctor the same week. Not so with neurology, atleast in Nebraska. I called about this and they seemed pretty liaze-faire about the whole thing.


Neurology RN: " I don't want to inconvience you, do you just want to do the EEG in three weeks when he sees the neurologist?"


Me: "I'd like it done as soon as possible, I'm okay making a separate trip. I'd really like to have this taken care of."


Neurology RN:" Well okay, but I don't want you to have to make a separate trip, only if your sure."


Me: "I'm sure;I want this resolved."





So we get an appointment for today and this conversation happened 1 week ago. And we don't see the neurologist for 2 more weeks. I'm just not patient, I guess.





So today we have the EEG. The technician put the electrodes on and immediately I knew something was wrong. This is similar to what the screen looked like:



And just for refence, this is what a normal EEG should look somewhat like:




So, I'm no rocket scientist, or EEG reader for that fact, but I knew it WASN"T right. The technician calmly looked at me and said: 'I need to go wash my hands, I'll be right back'. Now I'm also NOT an idiot! No hand washing was not needed-this was Matthew's third EEG and NEVER did they leave the room. Quite the opposite, they need to document every movement he has while it's running, like eyes open, eyes closed, sucking on pacifier; etc. I've also used a similar line myself to excuse myself from the patient room, without sounding worried-only to call the doctor and tell them some important information. So I knew something was up. 5 minutes later (that was an intensive hand scrubbing) she returned. Now, she either has a case of over-active bladder, diarrhea, OR she called the doctor. I chose the third option, and I was correct. I said, " hum, I don't read these everyday, but that doesn't look even close to being normal." The technician said, "well, since you said that, I just want you to know, I've called the doctor and she may be showing up any minute." There, that's more like it- a bit of truthfullness. Well she didn't show up (I learned later that she had a packed schedule at the office) so the technician said that Dr. Wright was going to look at it and give me a call. She said that just to be sure, I should stay in town for a couple of hours till she called me.


2 hours came and went and no call, so off to home I went. Finally, at around 4 pm this evening, I recieved a call. The nurse said something to the fact of " Dr. wright has looked at the EEG and would like to start a new medicine, the person who officially reads our EEG's won't be in till Monday, but she's quite certain that these are Infantile spasms." My heart sank. I knew it, but refused to believe it. But it's true. I know a little about infantile spasms from my blogger friend Lisa , but have not yet allowed myself to think about it. I don't have enough information to give you right now, but I'm starting my research effective today. Unless you want to wait for my synopsis, Lisa has a link on her blog for more information or you can google it. I think it's a pretty cruddy thing and I'm not excited to learn more about. But information is power and that's how I've tackled everything in the last 9 months; with information.


For those of you who know me in 'real-life', please excuse me if my attitude sucks or if I'm a crab. It's not on purpose. I promise my true identity will emerge again, but I'm just going to ask for forgiveness early, because I know I won't be myself. On top of this information, I've also just now for the first time been processing some information that was given to me just prior to Matthew's discharge from the hospital and I will blog about that later, just not now. The combination of that information sinking in and this new diagnosis has put me a bit over the edge mentally.





We won't see Dr. Wright for 2 more weeks, but will be starting this new medication immediately. Please pray that Matthew tolerates this medication, that will all the medications he's on that he won't have any side effects and that this will be the trick for him. Pray that his neurological health surpasses that of what the doctor's are predicting. Please also pray for our family. The other kids don't really get it; but they see our heavy hearts and know something is up.

Neurosurgery appointment

Matthew saw Dr. Puccioni; his neurosurgeon yesterday. Matthew had a CT scan on Monday and he was able to look at that. He said he definately sees Matthew's brain tissue expanding as the fluid is going down. He still has enlarged ventricles; but probably always will. I believe that is true for all babies with hydrocephalus. Dr. Puccioni even went as far as saying that his head looks very proportionate to his body( although by statistics his head is in the 97% and his body is 10-25% ) and that his head is rounding and filling in nicely. He was very happy with everything and said he'd see us when he's....now get this.... 1 YEAR OLD!!!! Wow, it will be nice to have 1 less appointment to think about. Basically if there is a problem with his shunt, we'll know it, and can come see him sooner if need be.

Since Matthew will be turning 6 months old at the end of November, almost all of his doctors will be seeing him this upcoming month-we have LOTS of appointments. I'm hoping to keep up with everything. No more appointments this week, but he does have a few a week for the next 3-4 weeks. Around thanksgiving we have 5 appointments in 6 days!!! whew! So, I'm guessing most of our blog updates this next month will be Dr. appointments.....and maybe some pictures too!

Stay posted...........

Finally!!!!

I have hesitated to blog this, but I think I am ready to proclaim it, to the HIGH heavens!! Matthew is now sleeping at night; and by "professional" standards, they consider him sleeping through the night! WOO HOO! And let me tell you, I am a new woman!!!!

It all started Friday night. I don't know what happened, but he was tired; at 9 oclock. I layed him down and went to bed myself. He woke twice through the night, but went to bed fairly quickly after eating. Saturday, same thing; went to bed at 8:30 with 2 awakeningsto eat; and took two very nice naps Sunday. Sunday night, he went to bed at 8:30 again and said to Steve; boy I hate to be greedy but it sure would be nice to stretch that first feeding to 3:00 and then wake up at 7 for the day. Well, Matthew obliged nicely and woke at 3:30, chowed down and fell right back to sleep. He was up Monday for the day at 7:30. Last night, same thing, but an hour later. Bedtime at 9:30, wake at 4:30, up for the day at 8:15. Perfect. And his nap is also more scheduled. He's taking 2 naps that equal 4-5 hours together. He's more awake during his wakeful times and sleeps soundly during naps. His brain must just feel more "organized".

The pediatrician noticed yesterday when we went for our routine monthly visit. She said that he was so alert, and just a brand new baby. She said, "oh, I was so worried about him last month, but now he looks wonderful." I'm glad I didn't know she was worried about him, it would've made me nervous. He weighed 14lbs 7 oz
(up from 13lbs 1oz just 26 days earlier-for those of you with math brains that's 22 oz in 26 days) and was 24 1/2 inches tall. He had grown a inch!

I'm really hoping the sleep thing keeps up! It's been a blessing. I do love my sleep!

5 months old!

May 20, 2008- Holding you for the first time!

Bringing you home, May 31st

One month old

2 months old

3 Months old

4months old

5 months old!

Where has the time gone??

Why I'm not sleeping

Here's what's keepin me up at night! Please excuse the baby immodesty as I had just finished changing his diaper and forgot to put his jammies back on! It was late ya know!

updates of a random nature 10/7/08

I am increasingly wondering if Matthew will EVER sleep at night. I mean..for goodness sakes.. he's 4 1/2 months old. I had no problems turning the other children around, but here we are; as I start writing this, it's after 11:35 and Matthew is revving up for the night shift. Oh, what I would pay to sleep in my warm bed all night long. This too shall pass..I must remind myself...This too shall pass. We had an all nighter last night..6am before we decided it was bedtime. Oh man... it's hard to function during the day..hard to teach the kids. They are so patient with me and let me "sleep in" and are always encouraging me to go take naps; but I really do hope he figures it out soon. He is on SO much anti-seizure medication; you would think all he would do is sleep, but that's not the case!

Speaking of seizures, today is one of the first days I have not noticed any seizures! Praise Jesus!!! He also did this on Thursday, so I'm crossing my fingers. He had a trileptil level drawn on Monday and I think we should hear tomorrow what the result is and if we need to adjust his medication. Please continue to pray for these seizures to stay away; I can't help but imagine that he must feel so much better not having them.

My heart has been heavy this week. I try not to think about the future and just take one day at a time, but it's hard. My mind goes in a million different directions. I am a worry wart by trade and I do a very good job of it! I have so much to be thankful for; but Satan makes it so easy to fall into the land of self pity!

School is going..well..okay, I guess. This year has been the most difficult by far; with all of our appointments and such I feel like I'm hanging on by the skin of my teeth. I'm hoping we'll get into some sort of groove though here and I think much can be resolved with little Matthew if he could start sleeping!!!


Matthew is a bit of an internet superstar! You can find him here and here and here . These are all from his very young age. I just hadn't realized he was "out there" till I was thinking about it one day! The internet has been such a blessing for me since Matthews diagnosis nearly 9 months ago. I have met so many people that I am blessed to call "friends" and have found much valuable information including Matthew's stem cell therapy.

Nothing else I can think of off the top of my brain-drained head. Off to try to get this little monster to try to sleep!

When you can't...Jesus can

When you are the neediest, He is the most sufficient.
When you are completely helpless, He is the most helpful.
When you are the weakest, He is the most able.
When you are the most alone, He is intimately present.
When you feel you are the least, He is the greatest.
When you feel the most useless, He is preparing you.
When it is the darkest, He is the only light you need.
When you feel the least secure, He is your Rock and Fortress.
When you say you can't, He CAN!


cool poem, huh!