Tuesday, May 4, 2010

Everyday is like Sunday.

(Charlie 10 months and baby June, 1 day old)

On Sunday, May 2nd my good friend Lindsay had a baby girl named June, on Monday I took Charlie to the hospital to visit her. She is gorgeous! When you hold a new baby and look at your 'baby' you realize how much they've actually grown when you weren't paying attention. Charlie looked HUGE compared to June...and, for a second, she also looked like a big sister...and it reallllly got me thinkin', (this week) I'd love to give Charlie a baby brother or a baby sister. She was looking at baby June so adoringly it just melted me. I'm just sorry it takes so long to actually make and build another baby because our time together is limited. That and I'm afraid of another child having SMA or taking care of a high needs child and having a newborn or possibly missing and mourning Charlie while being pregnant/having a needy newborn. It's just a really big decision to make...so, Matt and I have a lot of talking and thinking to do.

The nurse is here right now, she's watching Charlie in the living room while I write this. I just got back from the gym and Matt is there right now as well. We are having a friendly fitness competition with one another, biggest loser style, because we realize that we need to be fit to not only be healthy, but to take care of Charlie. The heavier and taller and more flaccid Charlie becomes, the more difficult it is to carry and maneuver her...its like trying to pick up and hold 5 liters of uncontained water with arms and legs. We are constantly trying to think of comfortable solutions for her. She's outgrowing her 'TV chair' and she's only got about a month or 2 left in her carseat and special bathtub, and she's almost too long for her stroller....Charlie is soooo tall! We have an appointment with a place called Sunnyhill soon so that we can figure out what we need in way of replacements for all of these items.

Because we are using Charlie's g-tube more often (about 3 or 4 times a day) we are still trying to figure out a balance between how much nursing and how much g-tubing to do. Two weeks ago Charlie lost a couple of ounces so we were informed that we should give her a little more formula through the g-tube, so we did, and in 6 days she gained over a pound. Too much, too fast! I watched an episode of Geraldo once and it was about men who like their ladies big and they would feed them a couple 1 liters of creamo on a daily basis and watch them grow, all pleased with themselves...I kinda felt like that when we were told her weight this week. It's difficult to tell how much she's getting when she's nursing and then we are injecting food into her as well, and she's still too little to tell us when she's full...I feel like I'm pumping her full like a bike tire and could use a gauge to know when to stop. So, we're going to ease up this week and see what happens.

Charlie just fell asleep watching the Anne Murray special I TIVO'd the other day, and the nurse is going soon. I'm going to get ready and we're going to take a seawall walk and go for a picnic at the beach. It's only been two days but it feels weird having Matt home during the days now. Everyday feels like Sunday, and I like it!


  1. I'm just going to cut to the chase:
    1) Stroller~ the only stroller on the market that will work for charlie safely is the Max Easy S. http://www.exomotion.com is the distributor in the states. Charlotte and shira both have the earlier modes but Shira will be getting the new model in February. Not only do they lay flat but you need the indoor base that comes along with them. A tray will be available for the bottom of the stroller also and this will carry feeding pump, suction, bipap, battery everything. Don't get a stroller that doesn't lay flat!!!! BL Meyers is the contact in Seattle at www.exomotion.com her number is (206) 763-0754 begin_of_the_skype_highlighting              (206) 763-0754      end_of_the_skype_highlighting email: bl@exomotion.com Almost every type 1 I know has this stroller because they are incredible and do what we need for type 1's. make sure you get the handle for the indoor base also!! This is the best system for needs like our children has! If your people at Sunny hILL don't know about this system have them contact Susan Gmitroski Senior Ot At the QA (250) 519-5390 local 36762

    2) Charlie should lie traveling flat like both Shira and Charlotte do. The EZ-ON vest is the way to go! http://www.ezonpro.com/products/familyVehicle/adjustableVest.shtml this is the safest way for Type 1 children to travel and when traveling alone its imperative to place them on bipap/on their side/in the vest. Sunny hill will have to fabricate a mattress for you. Again they can consult with Susan at QA as she has 2 SMA Type 1 children 1 age 4 and Shira 5 next month.

    2) Bath you will need a bath chair or get into the bath with her like we do. Here's a link with several kinds of bath chairs and i'm sure Sunny Hill will advise. The problem with bath chairs and SMA type 1 is that our kids need so much support and these chairs are quite high. Many parents use head supports and lay their child in the bath with just a little water. I have always taken Shira into the bath or place her in the bath with Maxine and take her out from Maxine.

    If you need any info there is lots on SMAspace and I have a ton of info on Occupation devices also that work so you don't have to get stuck with anything that doesn't work. Head my advice on the stroller and if you like take a survey on smaspace hundreds of sma type 1 patients use the Max Easy S stroller!!

    Glad she is doing so well. Give her a hug from us!

  2. I also wanted to mention that doing administering large bolus feeds through a 60 ml syringe can be dangerous for type 1 children without a Nissen fundoplycation. It's imperative to spread out feeds so that our kids don't take on too much food too fast because they are stomach breathers. If you give them too much food they can reflux/aspirate etc. which leads to severe pneumonia. Charlie should be fed using a feeding pump over time rather than large boluses to ward of reflux/aspiration and the severe side affects from this. Just giving you the heads up.

  3. you are a very descriptive and gripping writer. love the descriptions of your everyday. good luck with your fitness adventure and getting all the equipment sorted. glad you are enjoying your "sundays" it's my fave day of the week. the seawall and picnic sounds fab :)

  4. I've been reading your blogs and I think you should go for it! That picture of Charlie with the baby is too cute! It says a 1000 words why...not?
    I think you've proved that you can make it through anything. Laugh about the Geraldo show!

  5. was wondering if you had a chance to visit Sunnyhill yet?
    they are a great resource and support for finding/building adaptive equipment. i know many kids/adults that have gone in and out of those doors, and some keep going back!
    ive seen such positive things come in and out of those doors, not to mention relashionships :)
    good luck! i hope it works out for you!