Birthday Wish

Two years ago...

If I were 10 years younger I would have had another child, SMA or no SMA. I would have loved for Jojo to have a younger sibling who would be his friend, automatically. As social as Jojo is, it really makes me sad that he has no friends his age who come to the house to play with him. Once in a while, grief visits me (there was a wonderful blog about this from a mother of a special child, but now I can't recall where I read it about two weeks ago or so). It takes all my strength not to cry and feel sorry for my son (myself, probably) when people at work talk about all the activities their children are into. It sucks, too, that there are about 6+ families (friends or co-workers) who have kids that are Jojo's age, and their kids go to the same school. I think I wrote before in an old blog, that these kids would have been Jojo's classmates, playmates, friends. It bothers me a lot when my son does not get invited to birthday parties, as he would have been if he were able to go to school with them.

And so, on my birthday, this is my wish: That God will send a couple of angels to be friends with Jojo, who will see beyond his physical handicap, who will be patient as he tries to speak and who will love him and always look forward to spending time with him.

Our Boy is Back

I'm ready for the bipap, but let me scare my Mommy first!

2 In A Scale Of 1 To 10

Jojo diagnosed himself as being sick this weekend. He started having increased heart rate on and off yesterday afternoon, but did not have any complaints and his O2 sats were good, so I wasn't concerned. I thought he was just getting hyper about his games. Then Nana came while I was letting him taste some ice cream. Nana thought his face felt warm and his hands cold. Hmm. I took his temp and he had a low grade fever of 100. When Jojo heard he had a fever, he said " I have a fever. I think I need to rest." He then asked to be put on the bipap and decided to take a nap for almost an hour; this was about 5:00pm. His heart rate stayed up in the 130's occasionally up to 140, but an hour after I gave him ibuprofen his HR was between 120-130. He woke up and stayed on the bipap. He denied any sore throat or headache or tummy ache. His nose was quiet. His lungs sounded clear. O2 sats were normal. Because of that little nap he took, he was not ready for bed until about 11pm. And from 11pm to 12mn or so, I must have turned him from one side to the other about 20x. After that, he slept through the night until 9AM, with us turning him 2x while he was asleep. He stayed in the bedroom the whole day today, mostly on his bipap. O2 sats still good; HR just a bit elevated. No fever. Still no complaints, but he rated how he felt as a 2 in a scale of 1 to 10. We don't know what's going on. But he said he's still sick. I guess we just need to watch him some more in case he's having what his Dad had. Brady had a sore throat Wednesday, and by Thursday and Friday he had a bad cold. He didn't feel good at all and his nose was just pouring. He stayed away from Jojo and wore a mask, but on Thursday, he had to stay with Jojo while I was at work. He's better now, but still with some postnasal drip and coughing. So that's the kind of weekend we had.

Surprise in the Mail (via UPS)

Look what we got in the mail today.

Lots of fun toys and goodies.

Along with confirmation for hotel reservations/dinner reservations, a check, maps, and a lot of goodwill. We are really getting very excited about our Disney trip. It's just 18 days away.

Thank you Kids Wish Network and our wonderful wish coordinator - Jill H! We're sure to post a lot of pictures when the time comes.

"Hey, Soul Sister"

It snowed again today, but it was not as much as we expected. By noon, it was all melted.

And someone missed it because he was monkeying around.

I know that I post quite a few videos of Jojo singing, but I just love it when he sings! Could you imagine if he didn't have this darn SMA and would have more breath to sing with? I would like to think that he is a happy boy because he sings a lot. And it tickles me when he learns the lyrics by himself, even if some songs are probably not appropriate for his age. Like this song "Hey, Soul Sister" by Train. But no matter, I am my boy's number 1 fan.

Birthday Gift

My mom would have turned 78 today; and my dad, 79. Happy birthday to both of them!!! And yet, Brady and I were the ones who had a most wonderful gift this morning.

Last week, at least four children with SMA earned their wings. I can only imagine how their families felt when they woke up that first morning after. And so when Brady or I leave for work, our sleeping boy gets sloppy kisses and tight hugs. And prayers are said for God to grant us many, many, many, many, many more mornings with him.

Who Dat!

Anything is possible. Maybe a win for the Saints?

All eyes glued to the TV. Except for Jojo who opted to stay glued to his computer.

Touchdown!

It's official. The Saints are not the Aints anymore.

And this is the way I see it. If the New Orleans Saints actually won the Superbowl this year, then anything is possible. Maybe a cure/treatment for SMA will be next.

Superbowl Weekend

The frenzy of the holidays somehow spilled on to the New Year. There is not as much rush as during the Christmas season, but work is hectic and there's been always something to look forward to/keep us busy on weekends. Days, then weeks, rush into each other and before we know it, we have exactly a month before we go on our trip to Disney World! That may be a lot of time to prepare for most people, but not when you figure in the complexities and demands of traveling with a child with SMA. And as of this time, we are yet to do the following: get new tires for our van, get a gel battery to make the cough assist portable, decide on a stroller to carry all of Jojo's stuff while we are up and about, figure out our accommodations, get Jojo's g-tube replaced...and we have yet to hear from our insurance company if they're approving a manual wheelchair for Jojo. I'm sure it will all turn out fine.

And what's been keeping Jojo busy? Brady had the weekend off last week after working one day and two nights the week before. We took Jojo to Alexandria for some shopping at Sam's and Target and we went to eat at a Japanese restaurant (Jojo's never been to one), and bumped into some friends. This weekend we, along with most/all of Louisiana, will be watching the New Orleans Saints go to the Superbowl and WIN!