Wednesday, December 31, 2008
I'm looking forward to a new year. I'm hoping for less Dr. appointments, more quiet time (ha, ha, I have 4 kids) and general new beginnings. Who know what 2009 will bring.
We're party-poopers tonight. I worked today and I work tomorrow. I'll be ringing in the new year in my jammies, hopefully sleeping in my warm bed. We were supposed to go to a friends house tonight and party, but, well...I hate to say it... but as good of a day as Matthew had on Monday, he had an equally BAD day yesterday and today has been full of seizures. :(
It seems like we have good days and bad weeks. So I guess I'm hoping 2009 brings good weeks and occasional bad days, versus good days and bad weeks.
Tuesday, December 30, 2008
A couple of things to note. Yes, my livingroom is a mess. We hadn't cleaned up from the birthday gift unwrapping explosion, and the "I'm gunna through everything around the house as soon as we get home from eating" explosion. Just good raw video :)
2nd- Watch him aim and hit his toy. This is something I don't think we've EVER seen him do. I believe his vision seems to be getting better. Andlook at the smiles were getting! They're coming back! And we're seeing a ton of them in the last couple of days.
3rd- my cat gets annoying at the end and I have to quit taping!
4th- you may notice Matthew's face seems a little 'twitchy'. We've noticed an increase in this in the last couple of days. We (and the neurologist) think that it is due to us weaning his phenobarbitol and that it will hopefully get better as his body adjusts.
And lastly, weaning him off his med's (we're down to 5!!! yea!!) has not proved good for his sleeping ability (look at the time of this posting)- He very RARELY sleeps during the day and at the night isn't promising either!
Monday, December 29, 2008
Monday, December 22, 2008
Wednesday, December 17, 2008
Here he is sitting in his special tomato chair. He really favors his right side.
Here is a stocking I just finished knitting for a gift. I had a lot of fun with it. I think I'm going to try to knit at least 4 more for the kids for next year. I think I may put their names in there as well.Matthew is now up to his full dose of Depakote and we have weaned him off of his Trileptil. The pediatrician called today and said most of his labs look okay and his depakote is at a therapeutic level. I will call Childrens in Minnesota tomorrow to see what they want to do and if we can start weaning off the phenobarbitol. We are down to 7 medications and realistically hoping to get down to 5 soon. I 'think' the depakote may be helping some. His OT today thought that he looked calmer and more relaxed and she also thought it seemed as if he was having less spasms. It's hard for me to tell, but I think it's better. He does seem more alert and more vocal; we're also starting to see some more smiles and I think he's starting to focus on things again. So we're hopefully going in the right direction.
Matthew has slept through the night now for 5 nights!! Yeah, mommy is getting some sleep!
On a sadder note, Steve went to work today to find out that he did not have a job anymore. This may make things a little interesting for us, but thankfully Steve had some vacation time that he will get. His boss did not think he had to pay him that, but after I informed him that I had called the Nebraska Department of Labor legal authorities and that it would be illegal for him to do that, he seemed a bit more willing to pay him his owed vacation :) Things at Steve's work have been a little touchy for some time, but we were quite surprised that he would let him go 8 days before Christmas. Steve worked for his friend Bart, today and tomorrow will start his job search. We are excited about what better things God has in store for him. We are claiming Jeremiah 29:11 'For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Steve is a hard worker is faithful to his employer and his customers, so I'm sure only good can come from this.
Prayers for a speedy job search are appreciated!
Wednesday, December 10, 2008
Wednesday, December 3, 2008
It looks like my last good update was on Saturday. Now Friday Matthew slept most of the day, but Saturday he was awake almost all day! He made up for the day before. My cousin Sara, her friend Ellen and I spent the evening with Matthew after we ate Cosetta's (a super good italian deli withing walking distance from the hospital). We watched Elf and marked Matthew's seizures on the EEG. See he was video'd the whole time he was there and also he also had 24 EEG hook up so they could coorelate seizure activity with what his body was doing.
Sunday the Dr. Doescher came through and said now he thought that Matthew probably was having infantile spasms. He wanted to give the Keppra one more day and he upped his Trileptil. I did not see any changes in his spasms the whole time. My cousin took off around 3 pm and we spent the rest of the day, well, lounging :)
Monday the neurologists switched call and Dr. Ritter came to see Matthew, but not until 6 pm. He said he hadn't had much time to go through Matthew's scans, but he wasn't sure what Matthew was doing. He needed the rest of the evening to go through his EEG's. All he did was stop his Keppra. He also had said not to worry about coming home anytime soon. He thought we would be there for a long time. He also wanted to have a phone conference with Steve so he could be in on the 'action' and decision making.
Tuesday around 12:30 we had the conference. He said he has a better picture of Matthew neurologically. He said there was alot of activity, but believes there are some infantile spasms, but a lot of things that ARE NOT infantile spasms or seizure activity. As he talked to Steve and I, he was like, and you can still go home today or tomorrow. WHATT??? Yesterday it felt like he told me to move in and get comfortable and today he says go home! My flight had origionally been scheduled for 5 pm, but I had canceled it. And it was now 1:30!!! So I called the airlines and they reinstated my ticket, and then had to find a ride to the airport. I called a taxi and they would pick me up at 3 pm. It was now 2 oclock. I hadn't even started packing! So I threw things in bags and got dismissal instructions, said my goodbyes, and was off! My stomach was in knots. That was very stressful! But, we made it to the airport in plenty of time to get on the plane and go home.
Now, I was a little bummed that it didn't feel like we really accomplished anything. We do know that he is having infantile spasms, and that the Keppra does not work. We did get a plan however. There are no quick fixes unfortunately. The couple of things that work quickly did not work for Matthew. They gave us a 10% chance of curing Matthew's spasms. They did however give us a 70% chance of making things better.
ACTH - a common drug used to treat infantile spasms has not been a drug that all 4 neurologists want to use, at these not 1st. Dr. Ritter stated it would be kind of like standing at the side of a raging river. People would tell you that you have a 3 % chance of making it to the other side of the river, but a 5% chance of drowning in the process. Would you try to cross the river?
Statistically, 3% of all infantile spasms that are symtomatic (that is what Matthew has) are cured with the high levels of ACTH, but 1 in 20 die. YIKES!!! I'm not willing to take that risk, as of yet anyway. Idiopathic infantile spasms have a much higher cure rate with ACTH, but that is not Matthew's type (ideopathic simply put means no reason for them.- Matthew's has a brain disorder, which puts him at risk for seizures)
So where are we now? We started Depakote and will wean off the Trileptil ( Dr. Ritter says trileptil can actually make infantile spasms worse.) Next we will wean off phenobarbitol and perhaps start Felbitol. There is a list of about 5 medications we can use. We still may need another trip to St. Paul, but we'll see. For now, we're hoping that the Depakote works.
That's all for now; I may update more later ( or I may not ) :)
Tuesday, December 2, 2008
- Matthew and I are home in Nebraska
- Matthew appears no different than when we left
- ... But, we do have a plan!!
I'm tired, no EXAUSTED and don't have the energy to go into detail tonight and we have to be up by 5:30 tomorrow for a all day CDC (children's development clinic) appointment in Omaha tomorrow that starts at 8 am. Just wanted you to know that I'll take my laptop with me tomorrow and get everyone caught up. I do think this trip was worth it; just not the results we were hoping for, but hoping that by Christmas we'll have some improvement.
Saturday, November 29, 2008
Thursday, November 27, 2008
Saturday, November 22, 2008
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
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
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
Thursday, November 6, 2008
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.
Wednesday, October 29, 2008
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!
Wednesday, October 22, 2008
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!
Monday, October 20, 2008
Tuesday, October 14, 2008
Tuesday, October 7, 2008
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!
Friday, October 3, 2008
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!
Friday, September 26, 2008
Imagine my suprise when, as I hustled around the house, I saw something very mysterious in Megan's room. I busted out laughing and quickly grabbed the camera.
This is our Lab (all 75 lbs of her) Brooke, SLEEPING on my daughters bed. I think she may be spoiled!
Here's a glimpse into our school this week. We're learning about ancient Egypt and our project was to build 'step pyramids' out of sugar cubes. Here's the kids creations. I was glad we glued them together as the kids wanted to eat their creations. We limited them to 1 cube. And yes, Micah isn't wearing a shirt. He basically hates all clothing except for shorts, Even in the winter! Good thing he homeschools and I keep the house warm in the winter huh!
Sunday, September 21, 2008
Here's the kids reading to Matthew. Look close at what Mason's doing. Matthew has fallen asleep; and Mason is saying "Wake up 'Maffew'; listen to the story" and pulling up his eyelids!
Here is Matthew smiling. Not one of his biggest one's but he's happy!!
I tried to upload a video of Matthew, but to no avail. Maybe I'll try to send it to youtube first. That'll be my blog project for the week! :)
On the calender this week:
Monday: school and Megan's piano lessons; I work in the evening
Tuesday: school, Megan and Matthew have a doctor appointment, visiting a friend from work who had a new baby, and work in the evening
Wednesday: school, Micah has homeschool PE, Matthew has OT (occupational therapy), and Mason has church classes(Eager Beavers) in the evening.
Thursday: Just school so far :)
Friday: the kids have homeschool co-op classes all morning, and probably grocery shopping in the afternoon.
Sometime during the week we probably should do some laundry and clean the house, huh?? I'll try and pencil that in somewhere!! Ha!
Thursday, September 11, 2008
-We went to the hospital in Lincoln Sunday night/Monday morning due to the fact that Matthew had to seizures back to back at home, they transferred us to Children's in Omaha.
-Dr Wright saw him on Monday and made a game plan-we love Dr. Wright, his neurologist, she's wonderful and truly loves children.
-Tuesday Matthew had his EEG and was SUPPOSED to be seen by the on-call Neurologist-he never came that day-wasted day at the hospital with NO new orders or meds being given. Matthew had many seizures that evening and through the night-the nurses would tell the residents who didn't think it was appropriate to call the neurologist-we'd visit with him in the morning when he rounded. Now remember, he didn't round that day-who was to say that he would the next?
-Wednesday--I was tired from being up with seizures all night long; and the resident doc that was following Matthew was entirely too rough with Matthew and a 'know it all'. LONG story-- short version-she was taken off Matthew's case and reported to the supervising resident. Momma was ordered to get some sleep if she wanted to keep her sanity. Neurologist came to see Matthew-NO bedside manner- he made a plan to start a new medication should Matthew continue to have seizures that evening. When evening came the resident following his case decided that the plan shouldn't be followed--WHAT!!!-- and we would see the hospitalist (a hospitalist take the role of the attending pediatrician when you're pedi. doesn't live in the same city) in the morning. Many seizures throughout the night and early morning.
-Thursday- I've hit a new level of exhaustion! The hospitalist comes to see us and makes a grand plan that includes NOT waking Matthew in the middle of the night , and grouping his cares together. We have figured out that his seizures mainly come upon awakening and when he is mad from being 'rudely' awakened by physicians and nurses. We start new medicine for seizures that should've been started the evening before. Pedi. neurologist (still the on-call one, as they switch hospital call every week- and remember , he was NO bedside manner-or personality for that matter)comes in the evening. States that it was the WRONG medicine that was started in the morning, puts him on a third medication for seizures and will take the other med away gradually. GRRRR!
-Friday- I'm starting to feel that I've slept more, Matthew is more rested and we're getting ansty from being in the hospital. A good friend of mine calls and surprises me. She's coming to my rescue- she frees me from jail-I mean the hospital- and takes me to the Cheesecake Factory for lunch, yummy! We've started the knew medication on Matthew and he only had 1 seizure throughout the evening. The doc's start talking about going home, but say that the neurologist has the final say and the nurses say he's very conservative about letting babies go home. My thought is that there was not much they were doing at the hospital that I couldn't do at home. Matthew did not have an IV, and they weren't actively doing anything with the seizures he was having-other than charting them in his record. Matthew was eating and peeing adequately. And I'm fairly knowledgeable on giving medication and changing the dosages :) So when the neurologist comes through after supper that evening he tells me that he is not wanting us to go home till Monday at the soonest :(. After much discussion, he agrees that since he's only had a few seizures and since we have an appointment already on Wednesday with our normal neurologist, he'd be willing to discharge us in the afternoon on Sat. if Matthew has a good night.
Sat- We go home, yay!
We're so glad to be home! Matthew is still having a few seizures here and there; but they are definitely not as severe as before. We were able to see our neurologist yesterday and she fiddled with his medications some and was able to give me alot of answers. She was a bit frustrated also with the lack of management on her partners behalf and told me should it happen again-atleast during office hours-she was a phone call away and she would do her best to fix it. We love Dr. Wright!!! She was happy with his progress though and hopes within the next couple weeks that the seizures will go away. She gave us some instruction with his vaccinations also and we will be visiting with the pediatrician on that with his next appointment. We are fairly certain that this was aggravated by a reaction to his vaccines. See his EEG has always shown that he had 'sub-clinical' seizures, meaning brain activity that was like a seizure, but just with no outward results. Since his 2 month shots, however (he only received 2 of them vs. 5) he's been extra 'jittery' and I believe was having seizures the evening after he received them. So it's not like he has seizure DUE TO the vaccines, but more likely his central nervous system just can't handle the extra burden some vaccines put on his body.
On the calender for the rest of the week- Occupational therapy comes today, and I have an all day conference in Omaha tomorrow. I may try to go get pic's taken of Matthew this evening, since he's due (overdue) for his 3 month pics. Then, I work the weekend. Speaking of calenders, I lost my planner :( and I'm feeling very lost myself. I'm desperately searching for it as it has my "life" in it. All my days I work, my meetings, Matthews doctor's appointments, important phone numbers, EVERYTHING!!! So say an extra prayer that I find it.
Well I think that's enough, since when I started this it was going to be a short post-ha! I guess I got a bit long winded!
Sunday, September 7, 2008
Matthew is now on Phenobarbitol (they doubled his dose) and Trileptil (another seizure medicine) for his seizures. We have only noticed *slight*seizure activity today with maybe only 3 seizures lasting 45 seconds or less. If you didn't know what you were looking for, you probably wouldn't even notice, you'd think he was just a little jumpy. He was smiling and cooing today as we've never seen him. He is CONSIDERABLY less fussy. It's amazing. We're seeing a cute little personality emerge. Which makes us feel even worse that he's probably been having seizures for many weeks and we just didn't realize it. The docor says that the longer the activity goes on, the longer it takes to reprogram the brain *not* to seize; hence why it's taken so long to get the seizures to stop and why they are still sort of happening. Let me stress though they are a minute fraction of what was happening. We truly have brought a different baby home from the hospital. and we have NO plans of visiting again anytime soon!!!
Friday, September 5, 2008
I'll post more later, but I'm working VERY hard to try and go home today; details to follow .
Thursday, September 4, 2008
Mommy, on the other hand, is exausted. there is little thought for the parent to get real sleep and with full vital signs every 4 hours and with 5 different people in our room ito "assess" Matthew at 5 different times between 6:45 and 8:30 a.m. there is not much sleeping going on. We have been heavily relying on naps throughout the day. We're hoping this changes tonight since one of the many new orders written by the Dr. was to change his vital signs to every 8 hours, yeah!!!
I have some pictures of Matthew on my camera, but my batteries are dead!! I'll have to wait till we get home. I am seeing improvement in some areas and I *think* the seizures are getting less intense. I'm ready for them to be gone, though. I'm hoping we'll get to go home by Sunday, but not sure on that. I'll try to update every day and let everyone know what is going on.
Please pray that these seizures stop, that they find the perfect combination of medicine for Matthew, that the side effects are minimal and that there has been no long-term damage to his precious brain.
Monday, September 1, 2008
Matthew is also a hard IV stick. The nurse tried once, even though I told them he's a hard stick. One of my favorite NICU nurses came down and tried with no avail. Finally, they called the anestesiologist and he got it after 2 pokes. Then off to CT. The CT was normal for him. His ventricles are still enlarged, but not bad for him. They then contacted his neurologist and ordered a large dose of phenobarbitol. The neurologist suggested sending him up to Children's but the ER doctor thought I'd be comfortable taking him home after the IV dose since I was a nurse. Well, he guessed wrong. I am SO glad I'm a nurse and have lots of knowledge to help care for him; but sometimes I just want to be a knowledgable MOMMY. The last time he recieved a phenobarbitol bolus, he had a episode where didn't want to breathe and dropped his temperature. I really didn't want to do that at home; only to call 911 and return to the hospital WITHOUT IV access that we had worked SO hard to get. He said that if I wasn't a nurse he wouldn't have thought about NOT sending me. Well, I said, in this case, don't treat me like a nurse, treat me like a mom. He immediately set up a transfer to childrens.
Today he has seen his neurologist, his neurosurgeon, the hospitalist and the resident. They have given him a couple more loading doses of phenobarbitol and he seems to be better seizure-wise. He is very tired though. There has only been one other time we have possibly seen seizure activity. They will be keeping us tonight again. We will have an EEG in the morning and Dr. Wright's(neuorologist) partner Dr. Oliver will see us. We will go from there. I'm hoping to get a bit of sleep as I was up almost 30hours straight yesterday/today without any rest. I was able to sleep some this morning/afternoon after Steve came.
I just want to say a quick, but heartfelt thank you to all who have called us, are praying for us or have emailed or left comments on the blog for us. Know that you are being instuments of the Lord as you are keeping my spirits up. We really are doing okay with this. We want to get this figured out for Matthew, though and get him on the road to developing and recovering.
Friday, August 29, 2008
Somber, Matthew! We don't get too many smiles from our little "budder nut" (his official nickname-it started from little buddy and evolved!
Matthew had a doctor appointment today. He's three months and a week or so. He weighed 12lbs 3 oz. His head circumference was 44 cm- which is up. His phenobarbital level is 19. The first time it's been in therapeutic range for at least 6 weeks; but still on the low end. His pediatrician-along with his mommy- are a bit worried with all the "ticks" and 'jerkiness" Matthew is doing. Dr Springman called his neurologist and got his EEG moved up to Tuesday. I'm waiting patiently-not really-for this appointment. I'm actually fairly apprehensive about it. I'm been silently concerned for a while now with his neurologic status. Something just doesn't feel right.
I'm also entering into a new area of,well, I guess you'd call it grief. I thought I was done crying about this hydrocephalus crap. These feelings haven't surfaced since before Matthew was born. But now I'm seeing him starting to miss milestones; not holding his head up, very RARELY smiling (and mostly when he smiles it's not at people, but when his favorite music is playing. ) The receptionist today when we checked in thought he was sick. He was nuzzled into my shoulder and she said, "oh poor baby, don't you feel good?". I almost burst into tears right there. I am actually very shocked I'm feeling this way. I mean, really; my baby is ALIVE. Not everyone is lucky and blessed enough to bring home babies. Lately, I've become very aware of those either through SIDS or stillbirth who aren't able hold and kiss there babies . I have a beautiful baby to smooch all day. But every once in a while, these feeling sneek in. I'm just, well, sad I guess. Sad he's not smiling very much; sad he's not holding his head up, sad he can't try out his new bumbo I bought for him, sad he can't ride in his sling facing out so he can get a new perspective of the world; sad he doesn't hold his head up well enough to tolerate sitting in his bouncy seat so he can watch his brothers and sister work on school work; sad that when i talk to him he more often cries than coos, sad that I'm sometimes relieved when he falls asleep because he's not fussing anymore. I'm sick of forcing medicine down my child 2 times a day. Even though his appointments have thinned significantly, I'm sick of doctors poking and prodding him, (although we LOVE, LOVE our occupational therapist that comes to our home each week.) and sick of trying to find places for my kids to be while we are at the doctors. More often they end up coming with us and it's really too much to ask 3 kids to sit still for 1-2 hours in an 8x9 room filled with things they shouldn't touch-we're all frustrated by the time the day's over.
All right, pity party is over. I almost deleted what I just wrote, but I'm gonna leave it. I want to be honest. I want everyone who reads this to know I LOVE this little guy with all my heart, and I thank God everyday for my beautiful little miracle; but that it's not always easy. It feels good to write it too. To just get it out. I guess it's free therapy :)
I'll post an update on his appointment Tuesday. I don't know how much we'll know until he sees the neurologist the next week, but I'll write what I know.
Wednesday, August 27, 2008
Thanks, Connie for the pic! I "stole" this from my brother's MIL's blog! This one was better than the one I would've posted!
Wednesday, August 20, 2008
Matthew is 3 months old today. And we've survived the first 3 days of school, whew! I didn't fall of the face of the earth either :)
Matthew 3 months old, wide awake and content!
Matthew's first friend! This is Miles, and he lives here in Lincoln, and he is so stinkin' cute. He was also born with hydrocephalus and it's wonderful to have another family in town to bounce ideas off of.
Our traditional "first day of school" picture. Mason had to be included,too!
Mason, getting ready to go outside. Like his shiner?? Trampoline accident-he met Micah's head :(
My brother, "uncle Curt" snugglin Matthew. He was quite fussy the evening this pic was taken, but Curtis could get him to settle right down, and then they slept!!
Friday, August 8, 2008
Thursday, August 7, 2008
School is starting soon, like the 18th! Some of you may or may not know; we homeschool, so truly we could wait on this a week, but I like to have a schedule and stick with it if possible. I haven't even pulled out my materials yet (good thing I bought them while I was still pregnant!). I need to get my heiny in gear! Really, all I need is one GOOD day to get ready. Hopefully that'll be this Sunday or Monday.
And, Mr. Matthew does not understand the meaning of bedtime yet. I don't know why, but bedtime usually comes somewhere around 2-4 a.m. for me. See he's in our room, and I try to keep him quiet as Steve has to work in the morning; which usually puts us in the living room. I haven't slept more than 3 hours straight in my bed for a LONG! time. I'm itchin' for a routine, but I can't seem to get him into one. Between his last surgery, reflux and figuring out he's intolerant to dairy in my milk, he's not been the happiest camper.
SOOOO....you may not see much of me around these parts for a couple weeks...please forgive me. I will return when we get into a groove! I'm a little worn and weary, PRAISE GOD I have older children who can help me and let me nap in the afternoon. I am very blessed!!
I will however (hopefully) in the next couple days post some pictures. Matthew has made his first friend! We were able to get together with another family here in Lincoln who's child was also born with hydrocephalus. His Mommy, Sherri, also has a blog and has been a huge inspiration and "go-to" person when questions arise. Miles is 4 1/2 months older than Matthew, it helps to know where we're going! Sherri, her husband Joe, Greta and Miles came to our home Monday and we had great time and the kids played well. Our kids had a blast with their daughter, Greta, who is 2. I had to GENTLY remind them though, that she is only 2. They wanted to bounce her on the trampoline and all sorts of other things!
Well, off to deal with Mr. fussy. He's had his share of his swing.
Tuesday, July 29, 2008
Today he THREE doctor appointments!!! The first doctor appointment was the pediatric neurosurgeon. We met Sherri there! How cool, huh! Dr Puccioni says everything is great! We don't see him for 2 months! Yeah!
Next we drove to Omaha to see Dr. Troia, he opthamologist. They did an eye exam; and it was AWFUL! We won't do that again. They dilated his eyes and they put numbing drops in them. Then he proceeded to use a clamp that clamped onto his eyelids and then PRIED his eyes open and wouldn't let them close to even blink. Then they took this stick-like instrument and started moving his eyeballs all around. It was HORRIBLE!!!! He just screamed! and momma cried, too. He says everything is normal and his optic nerves look wonderful. Good news; if he had to be traumatized. He wants to see us again when he is 6 months old. I asked him is he was going to have to do that test again and he said, "no". I told him that was good, because we wouldn't come back if he was going to. I don't think I can EVER do that again. He had big marks on his eyelids for over an hour.
The last appointment was with the pediatric surgeon who did his hydrocele surgery. I'm glad I didn't make a special trip to Omaha just for that. I waited in his office for almost an hour. Then he came rushing in and took his diaper off and said, "looks great, the steri-strips will fall off in another week". Well, I could've told you that. He was seriously in the room maybe 30 seconds. It's an HOUR drive! Thank goodness I was already there! Matthew had enough trauma for the day though, so I'm glad in a way it was no more than that.
That was an exhausting day! Whooo! Well time to relax! And smooch my baby!