Thursday, August 23, 2007

How about some good news?

For once I am not whining... I actually have some good news.

MM appts went well this week.

She saw the immunlogist on Monday- no RA, no lupus. She just has a poor immune system, possibly related to her prematurity. We are to continue to keep her away from sickies, etc (who would have thought after 4 yrs we would still have to live like hermits in the winter). He said a simple illness could be a major one for her- which is true. He is amazed that an illness hadn't hospitalized her yet- we have come close many times, but I have just managed her at home. They will recheck her blood in a year though. Sometimes the bump in ANA is a precursor to lupus & it just might not have showed up yet.

She saw the opthamologist on Thursday. Again, good news. The bifocals seem to be working for the moment. We will continue with those & see how she does. We will go back in April & recheck her. He said there isn't a rush to surgery if the interventions are working. He said they used to rush into it & kids ended up needing another surgery to correct it. I am okay with waiting it out, so long as we don't miss our window to fix it. He said the window to fix is a lot longer than it used to be. So, good news x2!


We have a milestone moment....

MM's crib was convereted into a toddler bed! She asked for a big girl bed & wanted princess bedding. She still has a rail we added to it, but she did great! She slept in it last night for the first time, no problems! She did not want to get out of bed this morning! I can't believe that she is finally out of a crib! It only took 4 years, 4 months, 2 weeks & 1 day- but who's counting! LOL! My baby is growing up.. **sniff, sniff** Happy tears though!

Here are some pics of her trying out the new bed! Nana bought the bedding & made a frilly dust ruffle for it. She is also going to make us some very girly curtains.

Who wouldn't want to sleep in this bed!

Doesn't she look happy & content?

And that, my friends, is one post without whining, complaining or grousing!

Wednesday, August 8, 2007


Got a lot on my mind at the moment.
(Nice pic of a lot on the mind, eh??? Gotta love google image search)

MM starts her new school tomorrow. Her teacher is coming here in about an hour to meet her. The few conversations I have had & the one my mom has had with her have been quite interesting. Interesting not in a good way. She seems to be quite ditzy. I hope this is just an impression and she does a great job for Meghan. I can only hope. XXXfingersXXX

With MM starting school, I am feeling relief (and guilt for feeling relief). It has been a very trying summer. It has been an eye opener as to her disabilities. She has made some gross motor gains this summer, minimal fine motor ones though. We struggle daily with getting her out of her routines & regimines and engaging with us. With the lack of therapy for summer, her speech has become mostly scripted. It is heartbreaking and scary for I am terrified of "losing her". Losing her to her own little world- we have to fight EVERY day to keep her in ours.

We go on the 20th to the immunologist to get the results of all the blood work she had done. Her ANA is moderately to high elevated. I wasn't really worried at the beginning, but I am concerned. They again mentioned lupus and are very concerned about JRA (juvenile rheumatoid arthritis). I am praying it is nothing for we don't need or want any more labels. We also go on the 23rd to the eye doc. This is supposedly the appointment to decide on eye surgery. I say supposedly cause they have said this before. We will see. A busy month for doc appts. I still have to make her 4 year well visit (I know, I know late!!!), but we had to wait to see the immunologist first.

Lastly, I am worried about my hubby. He seems to be having a hard time lately. He is finally moving in the grieving process of MM's disabilities. He lived so long stuck in denial. He is now in the anger/sadness part. He is also feeling alot of anxiety. It is so hard with men cause they don't talk the way we do. He told me this morning that he could barely sleep last night worrying about things- money, bills, his job, MM's problems, MM starting a new school plus a whole lotta of other family drama. Can anyone say pass the Xanax??? I am worried cause even though he has been in denial, he was more of the rock around here. He dealt with MM better at times and I could always count on him for his undying patience. I guess his patience is not undying for he also is getting tired of dealing with this. As I stated earlier, it has been a very trying summer.

I too am worried about money & bills. We had to bare the expense of private therapy this summer since the school system is so lacking. I had to quit going to the psychologist myself so we could pay for her therapy. I hope that getting back to school will help her. New school, new therapists hopefully equals not having to pay out the nose. It has really made things tight around here. I guess we are stressed cause we have never had to feel that pinch except during my illness. We are not rich by any means, but we are used to being comfortable. We have had to tap into our savings for some of this and I don't like not having a big cushion to fall back on. I have also had to take a lot of days without pay (don't get me started on that cause I have TONS of time, my job is just a bunch of weenies at times) due to appointments & such which just puts the squeeze on even farther.

I realize that being a parent is never easy, but at times I wonder when does the true enjoyment begin. It is constant worry & work all the time. I know that is true of typical parents as well, but I don't know if they worry about every small thing like I do.

Guess that is it for now. Not so eloquent & thought provoking.... just what is on my mind!