Nice hodgepodge,uh?
After lighting reading the riot act to the mobility company handling Zoey's wheelchair,seems like they got moving pretty quickly after that.Which is a shame really.Why should we have to get snarky and forceful on these issues?Seems as if everyone did their jobs,the way they are suppose to be done, it would make everyone's life a whole lot easier.Most especially our children, that require the extra,extras in life. So... baring any glitches and don't you know there could always be one or two,Zoey should have her hot little pink rod, in about 2 weeks.Pretty cool.In fact,I was just thinking today,as I have a garage just screaming to be organized,how nice it would be to have a sturdy,comfortable,fitted place to put Zoey in,while I undertook the aforementioned task.Yeah,she could sit in her stroller,which is a cute little number itself,but it really doesn't fit her physical needs.A Physical Therapist,hers actually,would be a bit mortified at how NOT well she does fit in it.But it has served it's purpose and it is great to tool around in, but the wheelchair is going to be much better.At least I am hoping it will.
Her's is pink,with her name embroidryied on the back seat and the big wheels are fiited at the fron,in the hopes that one day she will be able to wheel it herself.Might prove tricky with one arm ...
As for the iPad,the one she was so generously gifted with a little while back,that should arrive in a week or so as well.After some legal mumbo jumbo,much of which I do not understand and much of which has been a gigantic headache for Marissa's Dad,they have been giving the go ahead to ship the iPads out to all 40 lucky recipients.So excited for all these children.And ... if your child or anyone you know of,could benefit from the iPad,hop on over to Marissa's Bunny Blog and check out the 2 Special Needs Giveaway they are doing right now.Really awesome what Mike and his cohort's have put together and are making happen and anyway you can support their cause and spread the word,would be greatly, greatly appreciated.
Onto the milk allergy.So, remember how I said that Zoey was allergic to milk,as in the past, as in before, as in no more?Well,I lied.At least I think I did.But like most things with Zoey,she is making it difficult for me to say for sure.See, I had been giving her yogurt through her g-tube when I did blenderized.Didn't seem to bother and no hives.Then she began eating and I tried it a few times and again,no problems,no hives.Then the other day,I tried again and all of the sudden she got this weird red splotchy rash thingy on her face.All around her mouth,kind of isolated where the yogurt was smeared on her face from being the messy little eater that she is.So,I am definitely in a quandary.Is it or isn't it an allergy of sorts still?I think I will lay off the yogurt for now and retry in awhile.Figures doesn't it?I really should learn to not utter certain things out load .They have an uncanny way of coming back and biting me.
Ignore the goofy look,can you see the spots?
Comic relief... my granddaughter Charlotte,trying to g-tube feed herself.Cracks us up.
Finally onto the MRSA saga.Thankfully,we or shall I say she,has managed to avoid a procedure on the remaining pocket of well,not to gross you out,but pus.The area is a whole lot better and is almost nonexistent.Almost.So glad for that.But this latest episode was just an unwanted reminder of yet another something,something, we have to always be on the look out for.Bummer.That is for sure.
Just a few little updates for now.Summer break has officially begun,to the herald already of, "I'm bored."To which I say,tread lightly my little boys,because I can find plenty of household tasks to keep you plenty busy.In all fairness,that was a few days ago and today,they have been perfect.They have spent the last 3 nights "camping out" in the backyard.So fun.We also began swimming lessons today,which we pretty much do Monday through Thursday,all summer long.And,we are heading to the beach tomorrow.Our first of many,of the summer.More tomorrow or the next,on the rest of the crew and the goings on with them...
After lighting reading the riot act to the mobility company handling Zoey's wheelchair,seems like they got moving pretty quickly after that.Which is a shame really.Why should we have to get snarky and forceful on these issues?Seems as if everyone did their jobs,the way they are suppose to be done, it would make everyone's life a whole lot easier.Most especially our children, that require the extra,extras in life. So... baring any glitches and don't you know there could always be one or two,Zoey should have her hot little pink rod, in about 2 weeks.Pretty cool.In fact,I was just thinking today,as I have a garage just screaming to be organized,how nice it would be to have a sturdy,comfortable,fitted place to put Zoey in,while I undertook the aforementioned task.Yeah,she could sit in her stroller,which is a cute little number itself,but it really doesn't fit her physical needs.A Physical Therapist,hers actually,would be a bit mortified at how NOT well she does fit in it.But it has served it's purpose and it is great to tool around in, but the wheelchair is going to be much better.At least I am hoping it will.
Her's is pink,with her name embroidryied on the back seat and the big wheels are fiited at the fron,in the hopes that one day she will be able to wheel it herself.Might prove tricky with one arm ...
As for the iPad,the one she was so generously gifted with a little while back,that should arrive in a week or so as well.After some legal mumbo jumbo,much of which I do not understand and much of which has been a gigantic headache for Marissa's Dad,they have been giving the go ahead to ship the iPads out to all 40 lucky recipients.So excited for all these children.And ... if your child or anyone you know of,could benefit from the iPad,hop on over to Marissa's Bunny Blog and check out the 2 Special Needs Giveaway they are doing right now.Really awesome what Mike and his cohort's have put together and are making happen and anyway you can support their cause and spread the word,would be greatly, greatly appreciated.
Onto the milk allergy.So, remember how I said that Zoey was allergic to milk,as in the past, as in before, as in no more?Well,I lied.At least I think I did.But like most things with Zoey,she is making it difficult for me to say for sure.See, I had been giving her yogurt through her g-tube when I did blenderized.Didn't seem to bother and no hives.Then she began eating and I tried it a few times and again,no problems,no hives.Then the other day,I tried again and all of the sudden she got this weird red splotchy rash thingy on her face.All around her mouth,kind of isolated where the yogurt was smeared on her face from being the messy little eater that she is.So,I am definitely in a quandary.Is it or isn't it an allergy of sorts still?I think I will lay off the yogurt for now and retry in awhile.Figures doesn't it?I really should learn to not utter certain things out load .They have an uncanny way of coming back and biting me.
Ignore the goofy look,can you see the spots?
Comic relief... my granddaughter Charlotte,trying to g-tube feed herself.Cracks us up.
Finally onto the MRSA saga.Thankfully,we or shall I say she,has managed to avoid a procedure on the remaining pocket of well,not to gross you out,but pus.The area is a whole lot better and is almost nonexistent.Almost.So glad for that.But this latest episode was just an unwanted reminder of yet another something,something, we have to always be on the look out for.Bummer.That is for sure.
Just a few little updates for now.Summer break has officially begun,to the herald already of, "I'm bored."To which I say,tread lightly my little boys,because I can find plenty of household tasks to keep you plenty busy.In all fairness,that was a few days ago and today,they have been perfect.They have spent the last 3 nights "camping out" in the backyard.So fun.We also began swimming lessons today,which we pretty much do Monday through Thursday,all summer long.And,we are heading to the beach tomorrow.Our first of many,of the summer.More tomorrow or the next,on the rest of the crew and the goings on with them...
16 comments:
I'm relieved to hear that Zoey is doing a bit better and sorry to hear that you might have been premature with the milk allergy thing. :(
I think we need to plan a family beach trip -- what beach do you go to?
Hate reading wheelchair horror stories. All too common. Will celebrate with you when it arrives!
Barbara
You know we'll be there for some of those beach days this summer! And next summer, we won't miss one! My way to spend the summer. I can't wait to be close to the beach. I love sweet Char trying to feed herself with a toobie. What a smart cookie!
Speaking to the comment about it being hard to navigate a chair with one hand...
I have a client who has CP...she has limited head and neck control (barely can speak) and control of ONE finger. ONE.
She navigates her chair on and off the bus, on her way to work, where she uses her chair to support her "eye tracker" speaking device (she moves her eyes to select the words and phrases she wants the computer to say for her. After work she gets herself back on the bus, usually stop by her friends restaurant for dinner and a drink, and then goes home. To her OWN apartment.
She has the support of an attendant at night who helps get her in and out of bed at night and in the morning.
So...just a (way too long, I'm sorry) story about the possibilities that exist.
Much love!
Brooke Annessa
www.theannessafamily.blogspot.com
PS: Can she have soy? Coconut? They make a GREAT coconut milk yogurt with LOTS of calories :)
Glad Zoey's on the mend. Have fun at the beach!
I am glad Zoey Grace will be getting her much needed wheel chair soon and her iPad, both are awesome and I can't wait to see her use both!
I am also happy she is getting better with the whole eye issue,
Have a wonderful summer, or try to, today it is overcast!
Ah to the end of MRSA.... what I was wishing for.. savor it! hope the milk rxn goes away and never returns, but I agree that with all the goings on a rest is needed. I have a great article from my son's old principal on the Importance of experiencing "boredom" in childhood and having no one "fix" it for you... when I find it, i'll scan and send!Happy summer... beach weather here in CT. too but the kids are still in school because of all the snow days... yeah!
You are the second person I've noticed that got an IPad from Marissa's Bunny! So did Grace!! That's so fun to see just how small our world is.
I wish I had an answer for you with regards to the milk allergy. I'd love to hear if you ever find out more on if that is a sign. Sweet Pea had something like that once recently and we have been trying new things a lot so I really should pay more attention!
Love hearing updates about Zoey, she's such a cutie! My daughter had an intolerence to milk and grew out of it by about 4 or 5.But she also had sensitive skin and fruit juice made her break out in red splotches if it touched her skin. Oranges, strawberries anything the least bit acidic. So was the yogurt mixed with anything that could cause a rash?
Well, well - it's off to the beach the Needham's will go. Summer is here! Glad to hear MYRSA issue is better, hiss boo to the possible milk allergy and yipee for the upcoming wheelchair (otherwise known as Miss Z's little pink rod) and I-Pod.
Hope you enjoyed the beach today.
Aunt Bluebelle
- Love, Love Charlotte trying to use "Aunt" Zoey's G-tube to feed herself. What fun it must be to have her with you Great photo!
WRT to the yogurt - make sure it's not the flavor she's reacting to. Bridget loved all those high-fat yogurts... but the strawberry one made her face all puffy and red. Now she can eat strawberries just fine, but at the time (7 or 8 months) that particular flavor made her break out.
Glad the MRSA is better!
FYI: My girls would break out in a rash on their face while they were eating ranch dressing. They grew out of it..Maybe Zoey is just having a reaction. Hope she gets her wheelchair ASAP...We miss Zoey videos...
The Steelman Girls
I am so thankful that Zoey's eye is healing on its own, and praying that the nasty MRSA stays away for a good long time (forever would be nice!). Wheelchair vendors must take some sort of training in how to screw with their customers because I have yet to work with a company, as a teacher or a patient, that does not have major issues. Good for you for telling them exactly what needed to be done and when!! I love the photo of Charlotte wanting to be like Zoey and hooking up her own "g tube" :) Too precious!! Could Zoey try soy yogurt or is she allergic to soy? Whe is still cute as ever, even with her hives!!
Oh, my goodness, Charlotte and the feeding tube!! What a precious picture. It should be entered into some kind of contest! So adorable.
Does Ella have diarrhea with the yogurt, or other GI stuff like bloating? I could sometimes give Mallorie a little bit of a REALLY good yogurt - ie, having good cultures in it - and she could tolerate it. She was was EXTREMELY milk intolerant. But I think the milk had to be broken down well by the yogurt bacteria for her to take it without reacting badly, so I stuck with brands that boasted a few (live) cultures. The best ever thing we found was kefir ... best (and cheapest) is to get the "grains" so you can make it yourself from milk, instead of having to buy commercial kefir. We even made it daily during one hospitalization right in the hospital room, from milk that came on the breakfast trays. It's really easy to do, and the cultures (bacteria, yeasts) break down the milk to something that is more likely to be tolerated. Of course, Mallorie seemed to have a milk "intolerance" and not a true allergy, so if Zoey tested as allergic, maybe that won't work as well for her. But if she could tolerate it, the probiotics in kefir are really good for immunity, and after I read the results of a study that used (commercial) kefir to treat c-diff infections, we used it to cure her of a really bad and recurrent c-diff infection. I swear, I really think this stuff was given to Adam in the garden, and he was told to keep using it and to pass it on to his children, for their health (and to preserve milk, too). :)
The picture of Charlotte and the gtube is hilarious!
Glad the MRSA is clearing up. Hope Zoey is 100% better by the time I finally get caught up on your blog.
I hope you have the wheelchair and iPad by now and are enjoying both of them.
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