First things first, look at this cute little munchkin. He's the latest blankie reciever.
Jaxson's new legs came yesterday. Yes new legs. He has leg straightners that he wears with his dafo feet, to help him stand up. He has his stander but sometimes you just don't have the time to get it out and do all that crap. He needs to bear weight on his legs at least once a day to prevent his hips from getting loose. Anyways, these are his dafo's...
and these are new legs. Cute little sea creatures. And I can't show you how he stands in them because I'm by myself and have yet to master the camera and hold him. Those extra arms haven't arrived yet.
I've gotten a big reality check since buying Jax big boy carseat. The reality of life with a handicap child. I need the handicap parking spot more than ever now. I can't carry him myself so if I want to run in a store I have to pull out the stroller and transfer everything into it. (We have yet to receive our new stroller)
You know when Jax was born I never thought I would have a wheelchair bound, total need child. I never imagined when he was born the care he would need. I knew he was down syndrome, and I knew he had heart defects, but normally one heart surgery, and some therapies because he would be a little behind is what was said most downs kids need. Oh and feeding issues too.
His ped and I were just joking the other day about when people ask what he has we just say everything, you name it, he has it. Brain, heart, lungs, bowels, blood, muscles. Sheesh, give the kid a break once and a while.
And I'm worried about how we are going to do Boston when the time comes. I hate to fly, so I don't know if I could do it alone. And there's no way I could take Jax by myself. But I don't think daddy could stay the whole time. I mean open heart for Jax means weeks in the hospital. But flying daddy out with us, home, and back out again to get us will be more than just a pretty penny. Needless to say the stress level is a little high right now.
30 comments:
First off the loving his onesie. He's a cutie patutie and I'd never want him to melt into my hands!!
Lillian also had to wear the afo's for a LONG time. She now has what they call patty-bobs in her shoes. Just another type of orthotic.
I know what you mean about the dragging stuff places. It is so overwhelming at times. People who don't have to do it, just don't understand it either. Anyway, I'm praying for you and all that lies ahead for you and your precious boy.
Oh... he is just darling in all of those pictures! I am afraid to fly myself. I hope all works out for you guys during this stressful time.
First off, in response to your comment on my blog: Yes, that is our yard. We have almost 2 1/2 acres. It's a lot to take care of, but we love it! We bought our house for the land and the area, not for the house. We have had to do a lot of remodeling and still have lots more that we want to do, but unfortunately, money doesn't grow on trees! That's why I love summer, because then we can be outside enjoying the yard!
I can't wait to see Jax in his Nap Nanny! I haven't ordered one yet, but I plan on it. How long did they say it would take to get it?
Now, for your update:
I'm so sorry that life is so stressful for you right now! You have a whole lot to think about and to plan for! I wish that I could help in some way! I pray that this will all work out smoothly for you and that it all comes together real soon! Is there any chance that insurance would help with travel costs?
I LOVE Jaxson's outfit and baby legs! He is killing me...I need some snuggles from your little man!
I have never seen his new legs before! Those are cool! Is that what they are actually called? How perfect for Jax. Gavin could use those too. And, those dafos are so little! I can't wait to get some for Gavin! His will be tiny too.
I realized how difficult it would be having a wheelchair bound child too, quite suddenly when we switched from the infant carseat to a bigger one! It stinks!!! This is part of the reason that I don't take Gavin out as much...it's just so tiring and hard to do! In and out of the van is so tiring when you can't just take the car seat with the child anymore! I totally relate and feel for you!
Hang in there Momma! You CAN do this!!! It may not be easy, but it is possible! I'll be thinking of you and praying for you! HUGS!!
Love his big red M! I can't help you with your fear of flying, but I am trying to get the raffle page ready by the 1st part of June. Hopefully people will be very generous! I got two foursomes of golf donated, one to Thanksgiving POint and the other to Sand Hollow in Washington, Ut
It might help a little:}
Flying alone doesn't sound a whole lot of fun, I mean I know Jax will be there but another adult would make a world of difference. Hope you can work something out that will lower the stress level.Will pray for that for sure.
Oh I absolutely love Jaxson's shirt.
Keeping you in our prayers. I have flown a few times with Junior and though it isn't easy(with all his equipment) we made it.
I love his onesie too!!!! Hang in there, you're doing such a great job!!! Jax will lead you, as he's been doing. He's just scrumptious... leg straighteners and all! :)
What a CUTIE !!! Sounds like stuff is getting you down (take a deep breath and look at his oh so cute little face !!) I cannot imagine being in your shoes on a daily basis...or even one day for that matter, you are AMAZING.
If you guys are coming to Boston I will give you a flight I have been saving on Southwest Airlines (I can transfer it to anyone) Then maybe Jax's daddy can come help for a bit (it would be one roundtrip ticket anywhere southwest flies) Angi :) agrasso@wildblue.net
I'm so sorry that things are tough for you! I read your blog and my heart breaks! I know what you mean about the stroller and the whole bit. I do that EVERY time I take Jayden anywhere. I usually have to have someone with me to push a cart too if I'm buying groceries. I hope for the best for Jaxson's upcoming surgery.
He looks so adorable!
Even though things are stressful, you are still keeping your sense of humor!
I love Jaxson's new legs and the onesie too!
I too have a fear of flying. I have been to Puerto Rico once and that is the only time I flew. I'm not in a hurry to get back on a plane.
Try to take some time to yourself even if it has to be a hiding place in your home.
Ok, so you know by now I'm not a beat around the bush kinda gal. I know where you're coming from. I do have a piece of advice on how to handle the stress of it all and it boils down to one word. Plain and simple... valium.
We put up a cool link to the blankie site! I think that is awesome what you guys are doing. Give Jaxson a big high five for me. We wish you guys all the best!!
Love the photos...love the shoes, love the new shoes you bought him several days ago! I am catching up on all my blogs! :) Hope you get some answers soon my dear. And yes, it was so wonderful to meet Heather, Mark, Zoey and the rest...such a blessing they are to so many. They way they loved Preslie was priceless too...I am grateful to know them! Well girly, good to catch up...give Jax big hugs! xo
Love the M&M onesie - how cute is that? I am so sorry about all the stuff that goes along with Jaxson when you are just trying to run a quick errand. I was so glad when someone told me that Carter qualified for a handicap placard when he was on oxygen - it was a lifesaver! Wish I would have known about that months before - but oh well.
I have a fear of flying too - even though everyone says its safer than a car. The problem is that I am not in control of the plane - but I can be in control of the car. I hope all works out for you guys.
Glad to hear I am not the only one who doesn't get around to therapy every single day - we are human after all.
Kristi
Okay. I sooo totally need to get my hands on this kid of yours. Sooo handsome!
You'll be surprised at what you can do when there are no other options. I say that only because I learned it first hand.
Do you know anybody who might be willing to donate some air miles your way?
As for my camera, I shoot with the lowest end Canon on the market. I just take lots and lots of shots and use only the best ones. hee,hee
Your in my thoughts.
Things will work out Lacey.They always do.Promise.Wish I could go with you.You know I would if I could.As for the issues,all of them.Boy do I know what you mean.Down syndrome seems to be the least of it doesn't it.You continue to amaze me Lacey and I continue to be proud of you and proud to be your friend.
*My little guy looks cute as ever too!!
I just love Jax's outfit!! Really cool!
Thinking about you - it is really tough sometimes I think. And there is nothing but just trying to get through things, one at a time...
You're in our thoughts!!
What an adorable onesie!
I hope everything all comes together for you.
He is so darling. I am sorry the stress level is a bit high, you are having to deal with so much. I wish there was more I could do to help out. I am up north a bit but if you ever need anything please don't hesitate to email me. tbdingman@comcast.net
I wish I had some words of wisdom to make everything alright, but I don't. I can relate to the flying - I had to fly with Bella when she was released from the NICU. We couldn't medi-vac because it was too far. The looks and stares I got as I shoved med after med into her formula! They probably thought I wanted an easy flight and was drugging her. :) I was terrified the whole trip. I have never prayed so hard in all of my life! I was so scared her heart would explode.
Do you know anyone in Boston? Or are you totally alone? Will they let you stay with him or is there a Ronald McDonald house nearby? I really hope when it's all done, your sweet guy will have had a successful operation. THe other hard part for me was leaving all the other kids behind.
Hang in there,
SHelly
Oh Lacey...as soon as I read your comment, I instantly wished that I could just hop on the plane and go with you. I just can't believe the connections we get to these kids just through a blog and I want so badly to meet Jax and your family. Heather just couldn't say enough wonderful things about you guys!!! I know it will work out...it always does but I know the figuring it out part is always the hardest.
Reading about Jax always humbles me and reminds me that even though Lily has her heart problems, our lives could be a lot more stressful and hectic.
You made me laugh when you said you haven't mastered the camera yet while holding him, and that your extra pair of arms had yet to arrive. I had that problem until I problem shot the problem and came up with the idea of setting camera on a table or some where near flat surface (other then the floor) and then setting my camera onto timer, make sure everyone is lined up, and the best part about it, you get more mommy baby pics!
We will be praying for Jax, I was thrilled when I found his page, which was through a friend of a friend. We don't get on myspace very often anymore. Now I can follow his updates a lot easier these days.
Sending you our heart hugs and blessings.
Jenna and Lilyana
Oh Lacey let me start by saying, "You Rock!" You deserve a medal for the mommy of the year! Jaxson is sooo lucky to have you! I probably said that before. I love his legs! They are awesome! You continue to be in my thoughts and prayers!
I have never fixed Lily's heart defects on her myspace page, so I can understand why you think she still has HLHS. She was diagnosed with in while I was pregnant but when she was born we came to find out she has Dextrocardia Situs Inversus, which means her heart is on the wrong side of her chest and is a complete mirror image of ours, Meaning..that the left chamber is the right and the right is the left. So when looking at it not knowing, you would have thought the left chamber was small and that was why they said she was a HLHS baby. Confusing, took me a while to understand all of it. So she has Dextrocadia Situs Inversus, CoArc repair, VSD repair with a residule ASD, AS with a completely defected Aortic Valve that will we will be getting rid of durring her next OHS and replacing with her Pulmonary valve, then putting in a synthetic valve in the PV's place. We went from only looking at 3 OHS, to now countless ones. She can have surgeries from every 3-5 years if not sooner to replace the synthetic valve, up until she is 20, durring that age we can put in an actual artifical one and be good for about 20 years...lol.
But even with all that said, I am still humbled. DS is huge, Lily will still live a somewhat normal life, while Jaxon will always need help and assitance. When looking at you, I see you as brave, courageous and strong. A woman I look up to because of all of the trails you have gone through and have will yet to go through. I am told i am brave and strong, which I am when I need to be, but you have gone through so much more then I have and still have your head held high.
Once again, sending our love, heart hugs and blessings.
Jenna and Lily
Her heart is a normal heart...ok that is kind of a funny way of saying it. But everything pumps the same, just backwards, If you were to open your chest and open hers it would be like looking into a mirror. Everything is hooked up the same in her heart..just reveresed. So her left side still pumps like it normaly should, it is just a smidgen smaller then it should be.
Now about the valve replacements. They cant put in a permanat artifical valve until she is 20 because of her heart growing. They have not made it far enough in technology to make a synthetic valve that grows with them yet. Thats why it will be every three to five years, depending on how quickly her heart grows, will depend on how quickly she needs another replacement.
I love his outfit!(M & M's are my favorite). He has cool legs. Will keep you and Jax in my prayers.
Hey girl... don't stress about the flying and such! It will all work out when it comes down to it. When are you planning to go to Boston? We should be headed there sometime soon for Baylee's heart issues!
Hugs - Tiff
I will have to say it's far to go and it's hard to plan being that far from there. I've been talking like crazy to a girl in the Hypertension area of CHB. They are AWESOME and so easy to work with! Let me know if you need any help!
Also, what kind of heart surgery will he be having?
Hugs - Tiff
No matter what happens Lacey, have faith that it will all work out!! I'll make a way to be there for you if in fact you do go to Boston...I won't let you sit there alone:) Just have to take this one day at a time & pray for the best. Look at how far you have come with Jax...YOU'RE AMAZING & you're going to do GREAT!!
THOSE LEGGIES ROCK!! Too adorable!!!
MUAW & {{major HUGS}}
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