Sams Blog

I am having a tough day. Sam is so sleepy lately. It is getting to me. The EEG has lasting effects on my mood, so that doesn't help, but that she is so sleepy makes it hard for some reason. She shouldn't be so sleepy. I can't wait until the med issue is resolved. If it is that, then we can fix it. It is hard to have her so sleepy because then we can't do the things we need to do. I want to play with her, go outside, do fun things together. But instead, she wants to sleep. I know it is a weird complaint.

Anyway, amidst my misery, I found a name for what I seem to be living with: Chronic Sorrow. I wanted to share this with people to help understand my life a little more. This is a clip from what I read on a preemie support site:

Kerry shares, "Just wanted to share some info I got from a nursing conference I attended on Fri. It was about the NICU dad. The info was fair about the dad - they tried to show how it is different for the dad and how he heals emotionally (usually much faster and easier). But what I wanted to talk about what something they brought up at the end - developmental delays and parents coping.

First they said parents should be prepared in the NICU to face delays later in development. They should be taught coping skills to help them through this. But... funny part - they mentioned this in only in regards to babies born with concrete disabilities, such as Downs syndrome. Of course I piped up and said that this info needs to be shared with preemie parents, too, regardless of gestation or weight. Had an OT chime in and totally agree. She said the NICU's are sending the kids out and saying "oh yeah they'll catch up, etc etc, have a good life" and never mention things like delays, or even Early Intervention (as we are finding here on preemie-l).

But this is the most interesting part... They are discovering that parents of preemies and parents of children with developmental delays might be experiencing "chronic sorrow". (There are some journal articles I am hunting down on this.) Chronic sorrow, in a nutshell, means that parents come in and out of a sorrowful state, but never resolve it. It is usually triggered by a specific event such as "milestone distress" which is when the child is supposed to be meeting a certain milestone (but doesn't) and this is reinforced in some manner (such as playing with like aged children, or reading a parenting magazine or book, or comparing children). The part that really gets me about this chronic sorrow is the belief that the parents feel they have resolved the issue, but somehow it continually creeps back into their minds and hearts, producing sadness and disappointment, as well as fear, anxiety and worry.

In addition, the speaker shared that chronic sorrow can lead to less than proper coping mechanisms, such as becoming a "super parent" - a parent who is a total expert on their child and anything that could possibly be related to their child. In addition, she felt that parents with chronic sorrow experience guarded hope, where they hope that things will improve, but in the backs of their minds, they continually doubt it...
...I wonder if this theory can account for our constant return to a fearful, saddened and anxious state about our preemie's development in the early years that we constantly see mentioned here. I know I feel this way. I was relieved in a way to hear that there is an actual term for this condition, other than calling myself paranoid, crazy, and obsessed, as well as unhappy with my child, and a demanding mom."

Mara, Clinical Psychologist, responds, "The question of whether what preemie parents whose children experience delays or prolonged medical complications is chronic sorrow or something else is very interesting.
While the description makes a lot of sense to me, there's a part of me that doesn't like it because it ties the ongoing distress to the original loss (preterm birth) -- as if the sorrow is mainly about that first event. I can't help but wonder if what we're seeing is an initial, traumatic loss followed by a series of additional losses, blows, disappointments, and traumas. So it's like recovering from an injury. The original injury does damage, but with proper support and care, you can recover. But if you continuously reinjure that same spot, the pain becomes more chronic. Maybe what I'm saying is really the same thing..."

So, Sam is getting to be a walking girl! She is so cute. She had an excellent session at gait training on Thurs. and her PT told us that now is the time that we have to make her walk every day in her walker/gait trainer. So that afternoon we were at Grampy's house and did some walking outside. She did such a good job. I was impressed. I am so sad we didn't get video. She was more upright and walking along so well. It took some coaxing but she got it. And was so pleased with herself. Of course, Friday she didn't do any walking, since we had the EEG. But today, she got to go outside again and walk. She took some time warming up but then did pretty good. She got tired kinda fast, but I think she was still recovering from yesterday. So she came in, ate some lunch, and is currently 3 hours into her nap! So I guess she is tired still!

But, it is so exciting to get her walking more. And to be outside is amazing. She loves outside so it is nice to get to be outside. We are also going to move her swing out to the porch.

She is also starting to do some belly-crawling. That is cool, too. It takes all she's got, but she gets up on those elbows and moves herself along. It is so cute. She doesn't get far before throwing up a little (sorry it is gross, but that is how hard it is for her!). But she is getting so strong. We are so proud of her, and she is going to get there!

OK, well, I guess I need to wake the princess.

Love to you all.
Lisa

Well, the dreaded EEG is done. I am not sure if I posted the date change, but it was yesterday. We were supposed to meet wtih the neurologist immediately after to go over the results, but he cancelled our appointment. That was disappointing, but in reality, it probably made the day more manageable. We got to get home by 4.

So, the EEG process is brutal. We had to sleep deprive Sam, only allowing her to sleep from midnight until 5 a.m. They said 4 a.m. but absolutely no later than 5 a.m. so we went with 5 a.m. That meant we had to be up too. I went to sleep around 10 so that I cuold be up at 4 and be ready to get her up at 5. Fraser had her 10-12 and then got to sleep a little longer in the a.m. since he was driver. We had to leave at 7 so he didn't get to sleep too much longer. We actually had a pretty fun night with her. We went to dinner, and then for a little walk and to a coffee shop for dessert for her, and a place to hang out. She got to have ice cream at 9 at night! So we hung out and had a good time together. Then we went home and she watched some videos and mom went to bed.

The next day, she woke up ok at 5, although was not happy about it, as you might imagine. She watched a video, to wake up and then had some breakfast. We packed up and left. The drive was uneventful. We gave her a DVD to watch and that kept her awake. Not much traffic to speak of. They took us almost on time and we went into the room, for the worst torture of life...to watch them measure her head and glue 30 electrodes onto her head. She has to be held still for this, and restraining her is bad, and holding her head is awful. For some reason she really hates that...gee could it be from 12 brain surgeries? So she cried and cried and cried. Books helped, but she still cried a lot. Then finally she got to go to sleep. For 20 minutes. Then we had to wake her up, and hold her head while they flashed a strobe light in her face for 10 minutes. That was a treat. And then finally they were done. Taking the electrodes off was a disaster, with lots more crying. It just broke my heart to watch her cry so much and to go through all of this, with all she has already been through. It is a really hard procedure for all of us.

So after it was over, we got her calmed down and gave her some lunch. We got the car, and headed home. She did sleep in the car, which was good. She ended up taking a 3.5 hour nap between the car ride and then being home. We even got a little nap in. Then, she didn't want to go to bed. She had a really hard time being alone in her room. That is not typical for her, but after her day, we certainly understood. So she stayed up and watched some TV with us, and went to bed. She was so sweet. She is so sweet.

And she slept nice and long, until 8:30 this morning. YAY! So we all feel a lot better today. Now we just wait for results.

When will I learn that my daughter is just so amazing? ;)

Today, despite having a cold, and being somewhat cranky, she crawled! Well, not off-the-floor crawling, but belly-crawling! She made movement on her own, with her arms and legs. and in a straight line! It was cool.

She has been making great progress in the last few weeks. She is almost sitting on her own, I think. She can do about a minute, and although that isn't too long, I know that she is on the verge of figuring it out.

With her illness, she hasn't done much for walking. I am hoping that changes this week, but I guess she has a right to be sick and not be asked to do too much. The new walker seems better, and she did get to walk outside. She liked that! I think she is going to do great with this new one. She is also going to see a specialist to see if she can get one that is better suited for her. The one we have might be best, but we want to make sure.

At gait training last week, she didn't do a lot of steps on her own (on the treadmill) but the PT got to work on her gait. Her PT was AMAZED at how much more stable she is, and how much core strength she has gained. That is nice to hear! The swing really seems to be doing something great for her. The progress is just amazing. Also, while waiting in the waiting room, there was another little kid and he said "Hi" to Sam and she said "Hi" back! It was so cute.

I also heard from the speech therapist that she is making a friend at playgroup. Another girl, Caroline, has taken to Sam. They were in the rocking boat and when the person who was sitting next to Sam got out, Caroline moved to sit next to her. They were also playing with each other's hair! How sweet. It makes me so happy for her to be making a friend.

I am just so terribly happy about how she is coming along. It feels so good to feel that way. I just wish I could spend more time with her...

well, I guess I will go now.
good night!

So we heard from the Dr. about Sam's blood test results yesterday. Her liver panel was perfect. I didn't even know we were supposed to be concerned! About 6 months ago she had an elevated liver test and the pedi thought it was probably because she was under the weather when the test was done, so she wanted to repeat it. We repeated it in Feb. and never heard a word, so I thought it was fine. Then we wanted to do a med level check before she goes to Boston for the EEG next week (more on that) and the pedi ordered another liver test. So, it made me wonder if there was something up. I tried to call but we never talked about it. The blood test results came back yesterday, and she called to let us know that (1) the liver test was perfect, and no worries there (the concern I had, and I am not sure if this is the issue, was that her seizure med is processed in the liver, so it could be taking its toll) and (2) her phenobarbital (seizure med) level was really high. Her last med level (in Feb) was a little low, so the neurologist increased her dose. Now it is really high. We we were wondering if that was responsible for her being extra sleepy and a little cranky. We will call the neurologist today to see what he thinks.

About the EEG, we have to do an EEG every year to monitor if there is seizure activity. We have no reason to think that it will be normal, and the neurologist was pretty sure there would still be a need, but they like to monitor things. So, we have to go to Boston next week to do the test. It is my least favorite test (see previous posts on the CarePAge!!). But maybe now that she is older, it won't be so bad. Let's hope. We get the results the same day. We do the EEG at 10 a.m. and at 1 pm we meet the neurologist to discuss the results. I like that system. That means we can do it in one trip. And we don't have to wait and see what is going on.

In other news, her PT brought her a new walker yesterday. THis one is blue, as opposed to yellow. It is not new new, but new to us. It is newer than the other one, for sure. It also has different hand grips which will hopefully be helpful. We haven't tried it out yet, since yesterday was spent trying to get it all adjusted to her size. So, she has gait training today, and after her nap I am hoping to get her in it, and walk OUTSIDE!! It looks so nice and sunny today. We shall see.

In playgroup this week she was great. I didn't get to go, unfortunately. The OT was there to work with her, which made it easy on Fraser. They worked with her sitting in a slightly modified toddler chair, instead of the special chair that they have, which is nice. And according to Fraser, she did a lot of saying "hi" to other people, including other kids. I wish I saw that. She is so sweet.

She is really such a happy girl. I hope we can get the med thing straightened out.

Love, Lisa

So, I am a proud mom. I hate to go on and on about how amazing Sam is, but, well, I am not sure what else to do! ;)

She is an amazing little girl.

Her regular PT (not the one she does gait training with) finally got to see her in her walker, walking. She said that Sam is doing the best she has ever had any of her kids do in the beginning. She thought although her legs were turned in some, her gait was surprisingly good. We do need to work on her posture some, but she is really getting there. I am so amazed by her.

Yesterday was a banner PT day for Sam. She did great walking, and then some great sitting up on her own. She sat the longest ever unassisted. She would also start to fall over and catch herself and push herself back up. A lot. She was amazing (I say that a lot about her!) Then she got on her hands and feet, and although I was providing a bit of trunk support she started to try to crawl! She moved her feet and hands appropriately. She wants it so bad!

She is talking a lot, too. Not a lot of consistent words yet, but she is making lots more sounds, and said "ooo" when she saw a cow on her DVD (meaning MOO of course!).

She is feeling better. Mom was sick for a while, too, and now I am getting better. Dad might be coming down with it, but I hope not. But at least she is doing much better and is much happier these days. It is good to hear that laugh again. She is so sweet.

OK, well, not much else to say right now.

Lisa