Saturday, November 29, 2008

Greetings from Minnesota!

I don't feel as if we have too much to update as things do seem to move relatively slow. Thurdsay night my parents returned home :( and friday morning my cousin Sara arrived around 11 am. (By the way, we've had a BLAST catching up; I told her last night as we were drifting off to sleep that I didn't think we'd had a sleepover for a long time!-prekids and premarraige for sure!-and that is over 12 years) Anyhow; friday Dr. Doesher came through and told us he didn't think that Matthew has infantile spasms. His EEG along with the video 'spasms' do not corelate together. He thinks he is having myoclonic seizures. Although I was happy to hear he didn't have infantile spasms, Dr. Doesher still cautioned me that he has a very 'disorganized, abnormal seizure pattern' and said it may be complicated to control. He wanted to start him on Keppra, which we did on Friday and he got both HEFTY doses yesterday. Consequently, he slept most of the day (and night too). He told us we should see improvement by the next day or twoThis morning when he came in, he asked if we had seen a decrease in his spasms. That was complicated to answer, because we had, but he also slept most of the day and he doesn't spasm during sleep. Unfortunately, he did not see any change in his EEG pattern. He said we would try it though tomorrow; but if we didn't see any improvement, we would move to Depakote and stop the Keppra. I think this will be what happens because he has been more alert today and has had numberous spasms.He also gave way to thinking Matthew has septo-optic dysplasia. He has a lot of the brain abnormalities that go along with this. Now, if I was actually blogging this, which I'm not, my mom is just cutting and pasting (thanks mom!) I would link it to some great site about it, but I haven't had the time to research it too much and I'm not about to expect my mom to try to figure that out. As we talked more, Dr. Doesher said that he should also have "hypothalmic-pituitary dysfuction"; but I know they tested him for that in the NICU and it came back negative. He said that we should still try to follow up with an endocrinologist in Lincoln, because he still could have had enough of my hormones in his body then and it might come back different now. He didn't see the priority of doing that here, though. If I understood him right, the significance of this diagnosis would be that he would have difficult to control seizures. I don't know the other significance of it; but I plan to by the end of the day. Those of you who know me well, know I'll be researching it as much as I can on the internet :)The unit has really quieted down. There were 5 dismissals today and only 1 admission. 2 people are going home tomorrow. So right now there are 4 kids and the possibility of just 2 tomorrow. It has gotten very quiet as 4 of the dismissals were 8-12 year old boys! Of the 4 that are left; our Matthew and another Matthew that has infantile spasms and is 11 months and two others! It's realy weird, there is not as much privacy here, everyone pretty much meets in the 'circle of the pod' and visits! The unit is set up in a circle fashion, with a room in the middle that all the kids play in (and the moms visit in) We've met a lot of nice people, and great nurses. We're really doing well. I'll keep everyone updated as I can; and I have some cute pics of Matthew to add when we get home.

Thursday, November 27, 2008

Updating for Jill

Hello everyone,Just wanted to update you all. I'm having my mom update our blog as children's hospital in St. Paul blocks my blogger login. I'll be working on that on Monday when all the personnel is back from the holiday. Also we cannot have anything on the unit from home that plugs in- so I'm limited to the community computer which is very frequently in use.Matthew is doing well. We arrived very safely on Wednesday. They hooked him up to 24 hour EEG, and constant video surveillance. That has proved to be interesting! He is always watched; that way he can coorelate what his brain is doing with what he is exhibiting. Today the neurologist came in (and by the way, we LOVE him-I'm working to see if he'll move to omaha!!) and the plan will be to watch him carefully again today and mark all of his spasm activity. Tomorrow, we may put him on prednisone, which is very similar to ACTH (a commmon med used for infantile spasms) but without the yucky side effects. He has read some studies that show very similar results with this medication and ACTH. There is also another medication, called vigabatrin, that seems to work very well, but is not available in the US. He would like to most likely start him on that once he orders it and it gets shipped here from Canada (it's not FDA approved, due to the fact it can cause some tunnel vision- a risk we're willing to take). He's thinking we'll hopefully to be able to come home by Tuesday, if all goes as planned.Mom and Dad came and spent Wednesday and today with me-we even found a place to serve us turkey dinner. It was YUMMY! My cousin, Sara is coming tomorrow and staying the weekend with me. It really is been good up here! I've even started talking to some of the other families up here. There are 3 families here from the Omaha area! And there's also another little baby here named Matthew (he's 11 months) and he has infantile spasms, too! Crazy. We're not the only ones out there struggling with nasty seizuresI'll try to update more through my mom this weekend- or maybe figure out how to get on my blog. Just know we're doing well, and that my internet is VERY limited (I'm having withdrawls). I'll try hard to keep in touch. You can always email me too, my email is I get to check it once a day or so (usually in the evening when all the kids are in bed!) Blessings to all!

Saturday, November 22, 2008

I'm leavin' on a jet plane..don't know when I'll be back again!

Well it is true! Matthew and I are busily packing our bags. We're scheduled to leave on Wednesday, for St. Paul, MN to the Minnesota epilepsy clinic. Since Matthew's diagnosis of infantile spasms, I've been in communication with Matthew's pediatrician, his neurologist and his early development coordinator in order to get Matthew more specialized care and get these spasms under control. I'd like to see them GONE, but I don't want to get my hopes up. Did I tell you I hate seizures. I REALLY hate them! They are robbers of Matthew's mind. I can just see him already starting to regress. He just looks so spacey with all the medication he's taking. He's now on 3 medications for seizures-too much medicine for one little man! I'm hoping they'll fine tune everything to maximize his medication and minimize the side effects.
And I truly don't know when we'll be home. They told me 2-10 days. The woman that authorizes Matthew's insurance for out of state was so funny when I told her that. She was like; "that's really broad-so how many pairs of underwear to you pack!!" Makes me laugh just thinking about it.
Yes, this means I'll be spending thanksgiving away from my family. I'm not particularly thrilled, but Matthew is way more important than one day. Christmas is coming, and I'd rather be home for that! Besides we've spend a lot of the major holidays at the hospital since Matthew's been born; so it sorta feels right :)

And Matthew turned 6 months on Thursday. I can't believe it! We got Christmas pics taken, but I'm going to get some of just him done when we get home. He's growing so much! I promise to post pictures soon, and I'll try to keep everyone updated on the blog while we're gone.

We'd appreciate your prayers as we embark on this very important journey!

Wednesday, November 19, 2008

I saw God today

If you listen to country music, then the title of this post will mean something to you- I do like that song! But, more importantly, I want to tell you something that I've been wanting to post for a long time. I've been trying to compose it in my mind, and I think I'm ready to write it.

See, since Matthew was born, my whole life has changed. Maybe it's just my perspective on things. I've been given new eyes to see things in a different light, so to say. I've often wondered, 'why our family'; 'why our precious, innocent baby'; 'Matthew shouldn't have to suffer'; 'why, God?, why?' Pity party, pity party. And then I think, God doesn't give us more than we can handle; so I guess He must've overestimated (by a long shot) what I can handle. I'm pretty sure he isn't remembering how weak I am.
But then I here this still, small, voice. 'I will not leave you or forsake you; I am with you always.' And just recently, it's really been revealed to me just how He's taking care of our family. He's blessing us, BEYOND BELIEF! How, you ask? Well, in phenomenal ways. And guess what, he's using all of you to do it! God is manifesting himself through so many people. Let me show you how God is taking care of us. See He hasn't left us. He knows our every need. We have not been left wanting. Quite the opposite! Our every need has been taken care of. I would like to give just a small glimpse of what an awesome God we serve.

The Lord has given us an amazingly supportive family. From our parents and siblings, to grandparents, aunts, uncles and cousins. We are blessed!
He's given us amazing friends. We are surrounded by wonderful, wonderful people that we are proud to call friends!
He's given us a wonderful group of people to call our 'church family'.
He's given me are the awesome group of women to work with. I dare say, I work with the best people EVER!
He's also given me a connection to people that I truly can call friends that I've 'met' through the internet. They are walking a similar walk as our family.
And all of our family and these friends we know through various affiliations have shown us there support in various ways. From praying for us, bringing us meals, giving me an ear and shoulder to cry on, phone calls, notes, kind words, comments and encouragement on my blog, setting up a bake sale, providing schooling for our 3 older children; the list goes on and on. Each one has come EXACTLY when we needed it. If I was having a bad day, for sure someone would call or be available to listen or whatever I needed, someone would be there to do it without even asking. God was working through them. They were blessing me and the timing was perfect. God's caring hand--stretched out in the form of friends and family. The crazy thing is, no matter how I say thank-you it seems that there is not enough words to express my gratitude.
And coming to the realization of God's protective hand through them is even more humbling.

He's also given Matthew an amazing set of people to provide care for him. I truly can say that we have an awesome team of people caring for Matthew. He has an AMAZING pediatrician, pediatric neurosurgeon and I really do even like his main neurologist, too (I know that's been a source of my frustration - but let me tell you- it's not that she not amazing and smart; she's just overworked) We are also VERY fortunate to have a great Early Intervention coordinator advocating for Matthew's needs. He has the most caring, experienced Occupational Therapist that comes into our home every week.
I'm sure that God orchestrated each person to be in the right place to be part of Matthew's life. It makes me think how God put each person in our lives. With all of the neurologists we've worked with, his main neurologist is very caring, smart and a good personality fit for me. I'm scared to think how I would feel if one of the on-call neurologists we've come in contact was his neurologist. I'm sure they are smart in they're own way , but I know I would be a wreck if I had to deal with them on a regular basis!
I also often wonder why we bought the house we did 5 years ago. It was on the verge of being too small when we bought it and now we're crammed. In fact, before I got pregnant we tried to sell it. But no-one, I mean NO ONE even looked at it while it was on the market. I know we would have moved out of city limits had we sold our home; or at least out of this neighborhood. Lincoln Public schools is known for VERY good early intervention services (these are the people that provide therapies for Matthew) I would hate to think of not having them to work with. And if we would have stayed in Lincoln, but moved out of our area, we would not have the same team of intervention staff working with us. I'm sure there are plenty of good teams throughout Lincoln, but ours is phenomenal! (Maybe I'm a bit prejudiced) God knew who would be the best for our family- and we've got them. I now know why our house didn't sell!

Wow, look at that list! Now that is literally HUNDREDS of people, I'm not kidding HUNDREDS! God has put all these people in our lives! He knew exactly what our family needed.

People keep telling me, "wow, your so strong" ," I don't know how you do it" and all I can think, is ' I'm not'. I keep wondering what they see; because I don't see myself as strong at all. But, I think if they see strength, then it is God who is strengthening me. And I'm realizing how much Matthew is changing my life and perspective, for the better! I literally get to see God- everyday! And leaning on Him for my every need is something I want to learn to do. He is showing me every so patiently how to do this. I don't know how much luckier you can get!

Thursday, November 13, 2008

Big changes this week

We have had a lot of changes come about this week. Matthew first- He had a pretty big cluster of seizures on Sunday while I was at work; so I had Steve bring him to the ER since I was working. He met me at work and we decided it was best to take him to the ER in Lincoln vs. Childrens. We figured they would just transfer us to Childrens', but the neurologist in Omaha didn't want to have us come up to Omaha. He said he couldn't do anything different for us than we could do at home. We also asked why we weren't starting ACTH, the most common drug used to treat infantile spasms. He was not very nice to us and told us that since he already had "problems" it wasn't worth trying to be that aggressive. OH, did that upset me! So Monday I spent the day on the phone, crying mostly. I talked with Matthew's pediatrician and she wants us to go to the St. Paul Epilepsy Clinic in Minnesota to get further (better) treatment. I did call the neurologist office on last Friday and Monday. I didn't get any call back on Friday and Monday I was only able to speak to the nurse. Tuesday, however, I was able to speak to Matthew's pediatrician again and she said that we couldn't get to Minnesota until the end of November or beginning of December. We were a little bummed. We just don't feel we can stand back and watch him have these spasms. From what we understand, as long as he is having these spasms, brain damage is occuring. So, to me, it feels of the utmost importance to get these stopped. But his pedi suggested we both call the neurologist in the morning and get some answers. Wednesday both of us called in the morning and guess what, I got a call from the neurologist HERSELF on Wednesday. Finally!!!! We talked at length and she answered a lot of my questions. First off, she took Matthew off the medication she started him on on Thursday because one of the side effects is anorexia and he had it, BIG TIME. He was barely eating and we still had to triple the medication. So we're going to option B; which is Klonopin. She said we should notice a difference by Monday. We're hoping! I also asked her why not ACTH. She said that in her experience, if you already have a brain malformation (which Matthew does, he has hydrocephalus, and an a thin corpus collosum) that ACTH usually doesn't work and it comes with a high list of scary side-effects. Now she was very okay with us going to Minnesota and getting a second opinion. In the mean time we're going to try different medications to cure them. So right now we're in the process of getting him seen in Minnesota. Whew!

Next; the other kids. With Matthew's health getting even MORE complicated and leaving me less time to teach the other kids, some of our very generous church family donated enough money for both of our children to attend our local church school. Now talk about humbling. It's something we would've never even thought to ask for, but God must've impressed someone that we needed this. I didn't even know we needed this. It was a very hard, tearful decision for me (it wasn't that hard for Steve) but we decided that it would be best to take advantage of this very gracious act. So, very quickly, my kids were enrolled. They started Tuesday. I think I spent most of Monday in tears. It was just such a overwhelming 4 days. I was sad, humbled, and relieved all in one emotion.
Micah and Megan LOVE school so far. It's been a bit of an adjustment, but they are doing well. The teachers have been very gracious to the kids. It really helps that they know some of the kids from church. Mason, Matthew and I are home everyday. I'm not Mason knows what to think yet with his brother and sister gone all day.

Wow, what a week. On top of everything I just told you about, we had OT (occupational therapy) Tuesday and Wednesday. Tonight Matthew and I are taking our second of three infant massage therapy class. Tomorrow we see Matthew's orthopedic doctor. The good news is, I don't have to work this weekend. I haven't had a weekend completely off since the middle of October. That will be nice! I'm looking forward to a restful weekend.

Monday, November 10, 2008


I am very visual. I love Nathan Greene's paintings. If I ever have a lot of money (ha ha) I will buy all his paintings! I love the one on my side bar and this one has extra special meaning! It reminds me that Matthew won't be sick forever. We are longing for heaven!

Thursday, November 6, 2008

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.