I've been putting off posting updates for some time now. It's been a roller coaster of a month and I just haven't gotten to it but here it goes:
One of the highlights of this past month is that on Easter Sunday, Parker rolled over from his back to his tummy for the first time since he got his trach. He's getting stronger too and is now able to hold his head up much better and uses his arms and fingers more purposefully. His fifth tooth has now popped through and he's 20 pounds!!! His visual tracking is improving and he can now see things placed directly in front of him and even things underneath his direct line of sight sometimes! He's still as smiley and social as ever and the absolute sweetest baby.
Due to the amount of suctioning Parker needs and the fact that I've been working more, we were approved for nurses all seven nights a week so we can sleep and it has made such a difference for us. I'm still tired most of the time but at least I can function and our weekends are more productive now since we aren't so sleep deprived. It's been so nice!!
Alexa is now 2 1/2 and amazes me everyday. She can say her ABC's, sing songs, recognize all of her letters, count to 12 (16 if you leave out 13 and 15) and has quite the vocabulary! She picks up on things so quickly and loves to learn new things. Her favorite thing to say these days is "What's that."
Alexa has also hit the terrible-twos. Yesterday she colored our dining room chair with an orange marker while I was on the phone with the Doctor. She did this two minutes after I reminded her that she couldn't color on anything except her paper. She always responds with "No" or "I don't want to" even if she really does want to. I've learned it's nearly impossible to reason with a two-year-old although for whatever reason I continue to try. She knows when she's being naughty though and I'm proud to say I've developed the "Mom look". You know....that look all Mom's have which is way worse than any other form of punishment since it makes you feel so incredibly guilty. Yeah, I've perfected it and when Alexa gets this look she almost always responds with, "I'm sorry Momma." She's been saying "I'm sorry Momma a lot lately". She does make me laugh though and I can't help but laugh at her sometimes when she's throwing a tantrum. She's also such a sweet big sister. She will give Parker kisses, rub his head and say "It's OK Paw-ker" when he's upset, and always tries to include him in activities. She's got a very loving heart and I look forward to see what she will be like when she gets older.
It's also been a trying month. Since Parker isn't able to sit up on his own yet, can't hold his head up for long periods of time, and doesn't tolerate tummy time too well, we've been limited on the positions he can be in. This means he lays on the back of his head quite a bit so he is developing a flat spot. His head shape also started to change pretty quickly and he started developing two "bumps" on the back/top part of his head. He saw various Doctor's which again said "I haven't seen that before" and then he had a CT scan of his skull. I'm still awaiting the verdict as to whether or not his sutures are closing too soon but the neurosurgeon believes Parker's skull bones are growing more than they usually do and the skull is becoming thicker in those two spots. He says this is just cosmetic and while they can do surgery to correct it the surgery is very invasive and scary sounding so we are holding off on that at this time. We just pray that these changes in his skull don't affect his brain or development and don't continue to get worse.
Parker also got repeat MRI's done of his brain and spinal cord. The neurosurgeon confirmed the original suspicion that Parker has a tethered cord and he is recommending surgery. Parker also has a cyst in his spinal cord and he's hoping that by untethering the cord this will allow the cyst to disappear on it's own. If not, another surgery would need to be done and this one would be more complicated. We are awaiting some more testing and decisions from the various Doctors to determine when this surgery should take place. I'm also looking into getting a second opinion which will have to be done out of state.
Last week, Parker had his first seizure. It wasn't an obvious seizure in that he didn't have any convulsions but he did lose consciousness for a short time and he quit breathing. Needless to say, it was scary but luckily Paul and I were both home and we did stay rather calm. I suppose it helped knowing that Parker was likely to have seizures so we knew what we were dealing with. He bounced back to his old self rather quickly and we just hope we don't see another one of them. He has already had two normal EEG's but both were done while he was awake. We have scheduled another one for next week where we can hopefully get Parker to sleep and see what happens.
Well that was our month in a nut shell. I guess I did leave out the fact that Paul left for a work conference in California for five days and I realized very quickly that I admire single parents soooo much! Additionally, Alexa got a double ear infection and got a bit of extra attention while she wasn't feeling well so now she still doesn't want to go to bed without Mommy or Daddy lying with her to help her fall asleep.
But no matter how crazy this past month was, we made it through and we will continue to do so. I know God doesn't give us more than we can handle and we will continue to take things day to day and trust in him! It doesn't hurt that I keep reminding myself that I get to leave Paul as the single parent at the end of June so I can go to Arizona for a few days with some friends. Hurry up June 22nd!!