Fatigue

I went to a support group  about a week ago. It's a little group up in SLC where a woman hosts a group of people and brings in a person to talk about a particular subject that the group is interested in per se. This woman, Anne, is a friend of my step mother-in-law. After this meeting I went up to her and introduced myself and Dallas and we began to chat. She had inquired if I had visited any of the online chats, which I haven't, i've browsed a little here and there and just lurked but haven't participated. She says one of the main topics of some of these chats are fatigue and if I had experienced this myself. I've never really fully recognized what i've been experienced as fatigue. To me its been normal but i've noticed the older I get the worse it gets. Apparently there really isn't much to do about it but I figure i've been living with it this long i'm used to it and it's not that big of a deal. I wish that I could take like and hour long to two hour long nap during midday and i'd be set to go. Some Saturdays when it's just go-go-go i'll sleep when Dallas sleeps and the remainder of the day is better.

Now Dallas is so funny. I can totally tell it affects her. The day after her birthday we went to 7 peaks waterpark in Provo. We got there about 11 and she hadn't had a nap that morning. She was such a trooper she lasted about until 2:30-3. By then she could hardly hold her head up. I can tell she's exhausted when i get her out of the car and she's still asleep until i lay her in her bed. That day she was asleep from 3 until 7 when I woke her up to get her something to eat and make sure she was doing alright. She lasted about half an hour and went right back to sleep. She slept until 7 the next morning when i woke her up to get her ready and take her up to her papa's house so he could watch her for the day while i was at work. He wasn't very happy when I came to pick her up. They love to play all day and he said that she was up for a total of 2 hours the entire day. I couldn't help but laugh. I had no idea the previous day would wipe her out that bad. She had actually fallen asleep on the way up to his house which is about 20 minutes away anyway. The days I go up there she's usually awake just looking out the window talking and laughing to herself. I think the fact that's she's just so little it takes more energy to fuel her and twice as long to recharge her. My sister has a little boy who is 3mo. younger and she envies how much more Dallas sleeps than her little boy. I get 12-13 hours a night out of her and she's lucky to get 6-8 out of her little boy. In a way it is nice because it allows more husband-wife time but less Dallas time when my time with her is so short anyway with me working. I just hope someday I can be a full-time mom so I can work with her, get her on a routine and be there for her. I think that that would be really good for her and for me.

Eating Troubles

We've had our troubles of eating. I still give her baby food and formula (for the nutrition she's not getting from not eating.) She likes to take the easy way out and just take a bottle its a faster full and takes less work. I had to fight her and fight her to make her eat. She is the most stubborn little girl already. I had to either make her eat real food or she would go hungry. I refused to give her a bottle. She would eat three bites and wouldn't take anymore and then whine and throw a tantrum reaching for the bottles she could see. So once she wouldn't take anymore we'd go play until she started to cry again. I knew she was still hungry. So we did it again with the food. Three bites and then the whining. We did this for a few days and finally she began to accept the food. I also had to hide the bottles so they weren't in plain sight anymore. Now I just give her a bottle before I put her to sleep just to satiate her, and help plump her up. I have found she likes the very plain and bland tasting food. She likes the meat or food with meat in it, more so the chicken. It funny how picky she can be already. My sister suggested maybe she craves the protein because she needs it to build the muscles. I think its a very valid point and could be.

She's in early intervention. They suggested maybe either her teeth hurt and that could be why she didn't eat or indigestion. My theory was when I brushed her teeth she didn't fuss so I don't think her teeth were the cause and I would just give her a bottle whenever she was hungry instead of trying to feed her, it was quicker and easier. I've learned to the easy way is probably not the best way. She does love to eat off our  plates when I make dinner. I think it makes her feel more of a big girl to eat big people food, which could be a good thing.

At least I don't have to worry about her becoming obese. She won't eat if she's not hungry. I'm trying to learn from that.

The Pros.....

Obviously its not a very happy disease but there are some pros....although they're mostly for the parents and they're kind of selfish I can't quite get her point of view on these things just yet.

With the fatigue she sleeps at least 11-12 hours a night. She usually is down between 7-8 at her own request and without fail is up between 7-8 in the morning. So its definitely a pro for the parents. We get several hours at night to do whatever parents do.....even sometimes I get those several hours by myself. Being over a year old she still takes about 2 naps a day. The afternoon naps usually last 2-3 hours. So I sometimes sneak in an hour or 2, I am usually exhausted by then.

She doesn't move a whole lot either, she can't walk yet and her crawling although improving isn't very productive. I don't always have to watch her or bring her room to room with me  because when I leave she's usually in the same spot, or vicinity, of where I left her.

She's so small and doesn't grow like a weed that I definitely get my money's worth out of her clothes. She's 15mo now and still can wear 6- 9-12 month clothes that she's been wearing for for the last 6 months. That is great! She's also not super stiff like a lot of normal kids she's very very flexible which makes her much more cuddly. Especially when she's tired or worn out she's very cuddly.

She's still very much a baby at this age. She's not a toddler because she doesn't toddle. Her appearance is looking more and more like a little girl but she's is still very much a baby. She can barely talk and can't walk....or stand.

                                                                 Daddy and Dallas

                                                            Dallas and her "papa"

 

             Dallas and her Mom

These are just a few pictures of us. She just has a special little personality so easy to fall in love with. She has little bonds with all of her family members. We call her "special needs" I don't think you would even know it unless you knew her or saw her try to move. She's captured hearts and I think a lot of it is she isn't "normal" and to see her try so hard to do so many things makes it so much more of an accomplishment when she does. That is one of the best pros. Every little milestone is so special to see, to see her learning little things and wondering where she picked it up from. To see her progress is just the absolute best!!

There are con's though, of course. Because she can't talk she whines a lot, its frustrating not being able to communicate. It's also frustrating for her to not be able to move everywhere she wants to get and get everything she wants to get. I make her work for it. If she wants me to hold her I make her come to me, she hates it and will throw a tantrum but how else will she learn to move or want to learn to move.

Pictures.

You can see the red triangle on her forehead and the side of her head this is from her second helmet it rubbed on her head and created some sores. So we had to go in and get it tweaked so that it wouldn't rub anymore. The helmet people are really good about doing that. then it's also a good excuse to keep the helmet off for a few weeks to let her heal.

She's in her swing which she hated but notice she's leaning to the side. She was about 5 months old and still couldn't hold herself up. She still had a hard time even holding her head up. We think the helmet probably helped strengthen her neck muscles. 

She's going wheeling in the 4 runner and she loves it!!

This is her second helmet which she got on in about January 2011. This was about that time. This is a Jenny jump up we thought might help her to weight bear. Her poor little left leg refused to go straight. Even now this is what she does when we try to get her to stand she stands on the side of her feet. 

here is a great picture of her clubbed feet. I think this may have been before she got her casts on she's probably a few months old.

here she is sleeping in the 4 runner while we're wheeling...another classic sign of the fatigue she can sleep just about anywhere. Notice her mouth is hanging open. That is also another classic sign. The mouth muscles are so weak that is why her mouth hangs open. Mine and my brothers also do. Luckily I married a great man who doesn't mind my drooling!!!...I'm asleep I can't help it!!

 Here is a picture of her feet at six months old. These are size newborn. I was told that here feet are so small because she doesn't weight bear. this was the week before her little foot surgery.

 Her mouth open again this was in april of 2011. Her third and final helmet I just put modpodge and glittered it. So much less maintenance.

 Her blessing dress. This was in March 2011, with her step-grandma (it sadly was the best picture I had of her) The dress is also size newborn. She is so small because of the MMD.

Here she is not sitting up. This was when she was 6 months old and still couldn't hold her self up. She could barely hold her head up. In this picture I had my hand holding her up which my friend photo shopped it out.