My mom left two and a half weeks ago and we have been trying to learn how to balance life without her here. I have to figure out how to get everything done that has to get done and still meet the boys individual needs. I quickly noticed that Peyton is going to need some special one-on-one time and that I am going to need some help around here if I want to be able to find my house in the mess, cook, do therapy with Drew, and make it to appointments! We had the social worker and palliative care doctor and nurse over on Wednesday last week for a home visit and after going over Drew's case they have determined we qualify to have a paid helper 4 hours a day for 5 days a week. That felt good to know that someone besides myself thinks there is alot to do. Fortunately we won't have to pay for this as Drew's condition warrants external financial support. They are also going to apply for housekeeping support on an occasional basis for us. I don't know what that will look like yet, but just the thought of that makes me feel about 10 loads lighter! I have been doing pretty well emotionally through all this so far, but the last couple days I have been really overwhelmed. I can't seem to keep up. How did we end up with so many #1 priorities and how do they all fit!? It would help if my brain could function - I started doing laundry on Tuesday and because I kept forgetting to turn the dryer on or change loads I am finally finishing it today! Yipes!
Saturday, August 23, 2008
I am going to take advantage of this moment... Drew is sleeping and I have oh so responsibly put Peyton in front of the TV so I can try to catch you all up. It has been quite a busy last two weeks for us. Time is all blurring together and I thought I lost track of time when Drew was a newborn - now time is a whole new thing for me! I could use 48 hours in a day to get all the stuff done we have to do in 24 hours! I won't complain too much though because I have a wonderful husband who has been helping out so much and I just adore my two little boys. They are the best!
Wednesday, August 13, 2008
I'm never quite sure what's going to come out of Peyton's mouth these days. He makes me laugh every day. He's beginning to give me a complex though - two times in the last week he has asked me about the baby in my tummy. Don't get your hopes up - I am NOT pregnant! I guess I need to do some work on my ab muscles though! Ah, sweet honesty. He made me laugh tonight too, not because of what he said, but rather what I said in relation to him. I was talking to my dad on the phone while putting Peyton to bed. Peyton was playing with some of his little plastic bugs and as I was talking I noticed him put one of the bugs in his mouth and start chewing on it. I proceeded to play the good mommy role and said, "Peyton, please take the bug out of your mouth." The phone went silent on the other end and all of a sudden I realized what I had said and how it must have sounded! I'm sure Dad was wondering what in the world I am feeding my children! We got a good giggle out of that.
The other thing that made me laugh today had a double side to it. I was trying to get out of the house today (which only took me 2 hours to do!) and my two dear boys must have been in cahoots against me. They must have known we were going to the mall! We were out on the deck, and while I was feeding Drew, Peyton was puttering about in the back yard. Before I realized what he was up to Peyton had the hose out and was watering the flowers at the back of the house. I was rejoicing over having help watering the flowers I can't keep up with and then I noticed he was hauling the hose with all his 3 year old might over to the garage flower bed. He went to the end where the drain spout is and set up the hose to make a river that would go about 20 feet down the length of the entire flower bed. At this point I was just watching raptly to see what would come next. He then went to find things to send down the river and proceeded to completely soak himself and cover himself in dirt. So much for asking him to keep clean... boy - clean - huh? Then he realized he had made a big puddle at the other end and decided it would be a good idea to jump in it! Oy. Now he noticed he was wet so he stripped his pants off and left them on the deck to dry (I just realized they are probably still out there!) while hollering that he needed some new ones. Against my better judgment I decided to run in quickly and grab him some shorts. I heard an odd noise from Drew on my way back out and peaked out the window to see why. Peyton had put his sandbox bucket on Drew's head. After groaning inwardly I asked Peyton to remove it and went running outside to intervene. Drew in the meantime took things into his own hands and tried to remove the bucket;;;;, however, he got a little aggressive trying to get it off and got his fingers stuck in the NG tube next to his nose. By the time I arrived on the scene (all of 15 seconds had passed) the tube was dangling out and Peyton was standing next to him pleading innocence. Is it really worth it to get out of the house? Does Peyton really need pants that will fit this winter? Maybe I can get by by making him wear socks that match his pants in case they are a little short. Hm.
The day closed off with a good cuddle. We thought we had Drew down for the night at 8:00 and then I went on to get Peyton to bed while Jordan went to the hardware store. After he was dressed and during the previously mentioned phone call he decided one of his bugs needed to climb up to try to touch one of his planets dangling from his ceiling. Uh huh. Oh boy. He climbed up on the dresser and was on his way to climb up onto the basket of books on top of the dresser in an attempt to get an extra 8 inches so his bug could get to the planet. Whose idea was it to hang the planets up? Maybe we should start praying that we don't end up in the ER with a broken arm! As a side note, I do not usually let him climb on the dresser, but again, curiosity as to what he was going to do next took over for the moment.
After he finally got into bed I gave him a short cuddle and started to move away and he quickly reached for my hand, gave it a good tug and placed it on his tummy where he seemed to think it belonged. After a couple sighs, he was out for the night.
It was a good thing Peyton went to sleep so quickly - no sooner had I walked out and prepared Drew's meds than Drew decided he was ready to wake up for another couple hours. I was so excited when I walked out of Peyton;'s room that both boys were down for the night. Ha. I should have known better! Oh well, Drew's been good company while I've been doing this. He's perfectly content tonight just to watch rather than play and has been chatting away at me! What a sweety.
Better sigh (meant to write sign, but should maybe leave sigh!) off for the night, but have to say a quick thank you again to everyone praying for our family. We have more hope and joy than I expected we would at this point. There are hard moments, but lots of bright spots too. I am sure that is due to our God intervening and pray He continues to do so.
Drew is eating solids again! Thankful! Pray he continues.
Drew's new anti-seizure med will take another 5 weeks or so to know if it will work - please pray it will!
We would like to see Drew recover some strength in his left side - he's real;ly not using it at all right now.
Please pray that we can find a routine that works for all parties quickly.
Sunday, August 10, 2008
So we were back to the ER again Saturday afternoon with little Drew. We had increased his two anti-seizure meds Friday at the neurologist's direction so I expected him to be a little dopey Saturday, but he was really dopey. Saturday afternoon his eyes started deviating to the left and he wouldn't look at us or at things we put on the right side of his head. It was like he could hear them but wouldn't look over there, or couldn't! His eyeballs were wiggling too - and I'm pretty sure he wasn't doing it on purpose. Anyway, he seemed conscious but very out of it. We called the neurologist on call (fortunately at this point we have 24 hour access, thank God) and he said he would like to see Drew so we loaded up and off Drew and I went to the ER. We got to the ER and the nurses quickly noticed he was seizing and started calling for doctors. I was calmer than they were amazingly. The doctor came in and started asking questions, "How long has he been having this seizure?" I answered that it had been about 11 weeks or so and he said, "No. How long has he been having THIS seizure?" I answered again that it had been about 11 weeks. He was having a hard time understanding me. I then explained that this was a new variation but that it hadn't stopped in 11 weeks or more. He was getting a little frustrated with me at this point I think and kept rewording his question to see if he could get a different answer. The best part of the situation was when one of Drew's neurologists finally walked in during this conversation and the ER doctor turned to him and asked how long Drew had been seizing and the neurologist said, "About 11 weeks." It's really amazing where you find opportunities to laugh in the middle of all this, but that seemed like a good one to me. I had to hold the laugh til later though. The ER doctor was a great doctor, he just didn't know what to think of the situation. He was ready to put Drew into a coma and intubate him (breathing support) to try to stop it - I was sure glad the neurologists came quickly! If they hadn't come quickly enough I think they may have arrived to see me wrestling the nurses and doctors to keep them from doing that to Drew! At this point, that's the last thing he would need. It would put him back that much further in his development and as much as they hoped that would stop the seizures, so far any time we have anesthetized him his seizures start right back up when he wakes up. If we thought that would work we would have done that a long time ago!
Speaking of time, it occurred to me that it has been three months now since this all began. Usually I feel as though time has been flying, but April feels like it was years ago. What a mind trip this has all been. Some days feel like way more than 24 hours!
Friday, August 8, 2008
Papa and Drew at their best!
I just had to post these pictures before I sign off for the night. We got Drew some "glasses" for his birthday as that is about his favorite thing in the whole wide world! He LOVES to pull glasses off any face that comes close enough. If you have whiskers or a beard too he might gravitate toward you with fascination!
Peyton calls himself Mr. McGillicuddy and even dons an accent. We aren't sure where the accent came from but you really ought to hear him, it makes even the straightest faced person laugh! The conversations you can have with him when he is Mr. McGillicuddy are even better! He wears these every day now.
Monday, August 4, 2008
Drew's first birthday cake - should have made it out of potato chips!
If there was any doubt - he still has his silliness!
Daddy could make a living at this job!
Abby, Natalia and Sam
Jordan, Jason, James, and Colin (aka "the Latin Lovers")
My Favorite Clark!
Drew turned one last weekend! Saturday was his birthday and we had a backyard birthday party for him. He slept through the first half but seemed to enjoy the rest of it - it was pretty entertaining! Jordan proved his artistic ability when we put him to work face-painting and the dads all got together and added another level of silliness to the party when they stepped up to be painted too. The moms weren't too sure who they were going home with, but it was fun to see another side of our husbands... James was calling them Latin Lovers, but they looked more like a bunch of ragamuffin pirates to me!
Peyton blew out Drew's candle for him and we tried to convince Drew that ice cream cake is good, but he was more interested in potato chips. I think Maggie ate Drew's share since he opted out!
We were off to see the heart doctor at 8:15 Monday morning for Drew. It was an interesting morning - we have to eliminate certain things from the typical morning routine to get anywhere in reasonable time. With meds, feeding, tube feeding, dressing, and cleaning up (along with any of the three year old detours) we have discovered it takes us about an hour and a half on average to get anywhere! Gotta work on that! Anyone know where I can find an extra 2 hands?
Drew had to get a few things checked out that we discovered when he was in the PICU in May. He had a small hole in his heart and a leaky valve. The appointment went very well and I think we can hopefully close the door on this concern. The doctor wasn't even slightly concerned with the valve, and he said the hole is so small it's inconsequential right now and should grow closed soon. It is a very common defect called a Ventricular Septal Defect (VSD) and is so common that they actually had a pad of paper about VSD with facts and pictures on it in the office to hand out. That was a bit of a relief. I will leave Drew's little heart to God now.
Wednesday morning we were off to the hospital again for an MRI of Drew's brain and spine. He had to fast before the appointment so this was what our night looked like. We put him to bed around 10:00 p.m. and then gave him a tube feed at 11:30 p.m. which was the last time he could have anything other than breastmilk. At 3:30 a.m. I was up to feed Drew again, nursing him and then topping him off with another tube feed of just breastmilk - then I put him back to bed and hoped he wouldn't wake up again as he couldn't have anything after this until after his appointment at 8:00 a.m. The only way he settles back to sleep at night right now is to nurse, otherwise he's awake for at LEAST an hour. I hoped in vain this time - he was awake at 5:45 a.m. which actually worked ok because I had to give him his meds at 6:00 a.m. this time. We were off to the hospital at 7:15 a.m. and he was into his appointment sometime around 8:30 a.m. They had to anesthetize him for the MRI so they gave him laughing gas and he was out quickly. After that, they sent me out to count sheep, drink coffee, or anything to kill time for an hour or two. They then tried to get an IV start on him for the anesthetic but couldn't get a vein for some reason. They tried twice in each arm, a couple times on each side of his groin, a couple times in his neck and then finally they gave up and drew the blood they needed from his head. Poor guy, I'm so thankful he was out!!! He's a little polka-dotted this week! Anyway, due to that, it took a little longer than expected, but eventually I was able to come in and see him again. What a trooper, our little Drew. He was so happy to see me, as groggy as he was. So endearing!
After that, we were off to see Dr. Kirton again. I was a little nervous about this as the last two outpatient appointments with him he admitted us to the hospital! It was better this time and he had pretty good news for us. Drew's weight was up a pound and a bit. The ABR (hearing test) he had done a bit ago showed that he has a slowed response, but not anything that will affect his hearing - many people of normal hearing have the same thing. His MRI was good as well, from the cursory glance Dr. Kirton was able to give it. Drew's brain does not show deterioration, and the MRI of the spine looks ok too. He is going to look at the brain stem a little closer, but he felt we would be able to eliminate one or two of the disease possibilities after looking at this MRI. We are a little closer to an answer, but there are still so many possibilities on the list. We are just trying to check things off one at a time.
Drew has added a strange thing to his repertoire of things to attend to this week - he has started sweating on only one side of his body! So strange! We thought it was coincidence or due to the hot weather this week, but after talking to the dr. he thinks it's how messages are being conveyed down Drew's brain stem. He said it's nothing to worry about, but just to keep an eye on. It is so odd - we go to pick him up from a nap and one side is just soaked and clammy and the other is dry and soft. Oh well, I will take a sweaty baby as long as he's as smiley as Drew has been this week.
On another note, we are increasing one of Drew's anti-seizure med's this week. His seizures have gotten a little stronger on the left side and his left eye is winking quite a bit so we are increasing one of his night doses by a small bit. Hopefully it will help - as cute as the winking is, the charm wears off a bit after a couple hours of it!
Prayers for the week:
Pray Drew will eat solids consistently.
Pray the new anti-seizure med will work to stop the seizures or at least manage them better.
Thankful for the blessing of family and for all the amazing friends we have.
Thankful for the many meals people have been bringing by! We would surely be tired of cereal by now if we didn't have so much help!
It's now 2:00 a.m. and we are still here. God has answered our prayer for the evening. Drew is not seizing at all! AT ALL. Amazing. He is pretty heavily drugged and is not sleeping and hasn't since 6:30 p.m. so we have to work on that one, but at least we are still at home in our own environment working on that one!
Sunday, August 3, 2008
Here we are, changing things up yet again. It's 11:30 p.m. and I am sitting here waiting for the Dr. to call back to see if we are doing the right thing for Drew. He is having stronger seizures tonight and they aren't letting up. He normally (said loosely) has been having constant movement of the left arm, and left and right legs, with intermittent stronger seizures that usually only last about 1 1/2 minutes or so. Tonight the stronger seizures haven't stopped. We are not sure whether we should take him back to the hospital or not - this is where it gets really tough. Are we making the right decisions? What's normal? What's ok? When should we be concerned? If we don't do something about this, is this a situation that could compromise him in some way? What do we do? ...Dr. just called back and we are going to give Drew an extra dose of one of his anti-seizure meds to see if that will help. We tried one of his "emergency drugs" at 10:30 at the resident's direction, but it didn't make a dent. We will now be waiting and watching for the next hour to see if this one helps - if not, it's off to the hospital again. Anyway, this is just life at the moment in the Clark house. I am certainly glad there is someone bigger watching out for us, but I sure don't understand why He doesn't fix things right away when we yearn for that solution so badly. There is a reason, I just don't understand. Please pray for our little Drew - he is doing so amazing in the midst of all this! He isn't fussing at all! We love him so much.