Man its been a rough week so far. I don't know if part of it is getting back into the swing of things from vacation or what. I haven't been sleeping at all. Part of that is Jax fault. I was thinking it was his tooth because he's getting that top front tooth in and its fiery red and swollen, but last night he wouldn't go to sleep and I was holding him and his bowels were really gurgling. Its making me crazy, I vent his g-tube but get nothing, its all air in his bowels. He not only doesn't poop on his own but he doesn't pass gas either, so his bowels are full of air. I'm so frustrated I don't know what to do for him. And it takes me forever to fall asleep, and as soon as I dose he's up again. My pediatrician told me she was going to write me a perscription for a sleep aid that's not addicting, but I won't take anything except melatonin because I worry that I won't hear his monitor at night. But melatonin only helps you fall asleep. So the 20 times I wake up at night it doesn't help.
So I have a super cranky baby, and we have been fighting Tanner ever since we got home to go to school. I got the psychiatrist paper for him the other day, and of course its typical autism stuff she see's. Plays by himself, worries, can't interact socially. She wants to see him weekly to. So it makes me wonder if he's really ready to be in a regular classroom, he's never there. He goes to resource, speech, OT, and now the psychiatrist. Yesterday I called our autism school that he went to for preschool to see about sending him back there. The problem is its the only school so theres always a wait. Next year is already full, but she's sending me an application so he gets on the waiting list, and if someone doesn't go he will get in. I still don't want to medicate him, but she's giving me something for anxiety thats fast acting and you only give it to him when he needs it, not every day. I am hoping this will help because he wont go to sleep at night until you tell him he only needs to go a half day.
Argh..
Also, I seem to be having a rough time with things lately. I keep seeing all of your videos of your cute kids and what they do, and it makes me long for that with Jax. The giggles, the funny things they say. Keep posting them, because I love to watch them, I just go through fazes were I mourn the loss of my baby, and I'm trying to bring him back out again, but his brain has been severly damaged. I just think lack of sleep is making me a little cranky too. I've been deciding how to get my girl, I always wanted 4 kids, but I really feel like theres a girl for me, and I have been thinking of adoption. Not only am I longing for a "normal" child, but I'm longing for a "normal" downs child now, does that make sense? Downs kids are definitly addicting, and I would love to adopt another one. we'll see.
Here's Jax with his froggy that
Alyson sent him, thanks so much, its loud and happy and he does turn his head to it when we play it.
10 comments:
Lacey, when I think of Landon, I rarely feel sad just because he has Down syndrome. Though I know it will take him longer to learn how to do things, I know that he eventually will. I'm sorry that Jax's brain injury has taken that comfort and reassurance from you (and especially from him). I think it is okay to have those days where you are just angry and upset with the world, especially when you are exhausted out of your mind. I know some days I wonder how I'm going to take another step when I have so much to think about and do and I'm overwhelmed by it all. I don't know the answer or solution, but I wish I did. Hang in there, and rest when you can.
Hugs,
Kelly
Lacey-
I'm so sorry things have been rough.
Please know we are here if you need to vent, yell, cry, or even laugh. These little guys need lots of love and support, and so do their mommies.
There have been several times when I've longed for normal baby days, and then I remember that no one else gets to experience some of the special moments that we get blessed with. That we appreciate and celebrate the little things in life that others take for granted, and it's not because they don't appreciate it. It's just they always know it'll occur again. We look at life differently, and know what a true miracle and blessing are.
God has something amazing in mind for you and Jaxson, he picked you out specially for that wonderful little boy. He knew you were the perfect mommy to love and give Jaxson everything he needs.
Don't get me wrong there are days we will question things and bang our head against doors, and on those days remember we are here.
Hugs to you and Jaxson!
Angela
Hang in there girl! So much going on and so many emotions to go through all of it! Exhaustion sure seems to compound everything. I have been so tired lately too and it just wears on my nerves like nothing else. Let me know what you need...chocolate, a good book, good story, yummy treats and i will get it to you...you just let me know. That's what we are here for to help others out and you do such a good job at that...reach out and we'll all be there! :)
I'm so sorry that your week isn't going well! Coming down off the 'high' of a great vacation is so difficult, plus when you are not getting the sleep that your body desperately needs, it's VERY difficult to deal with even the little things, let alone all that you have to deal with! I'm praying!
I wish that I had some answers to help you, but I don't. Just know that I'm thinking of you and that you are not alone in many of your feelings. I struggle daily with wishing that Gavin could do more! I'm not even asking for much...just that he will be able to sit on his own some day! I know that you understand. Most just can't understand. I hear so many people complain about their struggles and I just want to shake them and say, "Do you know how sad it is to have a child that may NEVER sit up, crawl or walk?!" It is VERY hard to see your child like this! As mothers we want so much for our children! And, knowing that a lot of the issues are caused by a brain injury that might have been prevented makes it even more difficult to deal with!
I wish you guys lived closer to us! I could really use a person like you around for support on this lonely and sad journey! I'm sorry that Jax and you are on this very difficult road with us, but I have really appreciated your support! And, I am not even dealing with as much as you are! I really don't know how you do all that you do so gracefully! Gavin may be developmentally at the same level as Jax, but he hasn't had to be in the hospital as much as you guys have.
I am SO sorry that you are struggling! Try to hang in there and know that I'll be praying and thinking of you! Plus, I'm always here if you need to vent! E-mail me: javanderwall@yahoo.com
Hope your week gets better! Hugs!
I wish I had the right words or that magic wand.All of the amazing women that have responded,have said it beautifully.We are here for you and some of us wish we lived closer but nonetheless we are here to support you in whatever way we can.I totally get the "normal" Down syndrome thing.Really I do.Zoey's road is harder than most but at the same time I know that others,like Jax, have it even harder.For that my heart aches for you and for Jax.But I have seen first hand the beauty in your child and I know the unconditional love you have for him and with that,there is nothing that you all will not overcome.Even this sadness you feel right now.The gift of Jax has given the gift of a clearer vision on life and what it is all about.that,I know you would not trade for the world.And Lacey, listen to those inner voices nudging you.Maybe there is another child waiting for you.Trust in God's timing.Mostly trust in yourself.You do an incredible job under some very,very stressful circumstances.Sending you my love today and wishing for some peace to for your anxious heart.Kisses to that sweet little guy of yours.
I just saw V's picture on the blankie blog, I feel bad, my bio for him took up half the page.. lol! You know what's funny, I just read it and realized that I never wrote that he has Down's. Sometimes when we see a new doctor I forget to say it too (not that they can't tell, I'm sure). It's just such a normal part of who he is that I just don't think about it anymore unless it's brought up to me.
So sorry that Jax is uncomfortable. Has anyone ever mentioned the possibility of a cecostomy. I know the last thing you want is another procedure, but it would help with the poo issues. You could give him flushes to help him go and have access to his bowel to relieve his discomfort. It doesn't really sound like a super pleasant thing, but it can't be much worse than a kiddo who's fussy and in pain. Just a thought. Keep your chin up, you've earned the right to feel bad now and then. Just keep in mind that Jax is here, and you have brought him so far already, I'm sure there are great things to come. One thing I've learned about kids with Down's.. they are stubborn and they do things when they are ready. So, brain injury or not, with your love and help he's sure to have a wonderful future.
Hi Momma Lacey!!!
I'm so sorry that you're having one of those weeks/days...Hopefully you're just getting into the swing of things. But, lack of sleep is NOT helping you!! Perhaps your hubby or someone can help you SLEEP for an ENTIRE night & take care of Jax for you so you can catch up...You need it!! Sleep depravation SUCKS for I'm living it!! GRRRRRR
I can't imagine what you're going through w/the pain of "losing a child" or having Jax be the way that he is NOT THAT HE'S NOT ANY SPECIAL...Pls don't take it the wrong way...I think it's a great idea for you to adopt a DS girl, you'd be SUCH a great Momma to that little girl. I know that my heart breaks to think that I may not have another child...a dream for a little girl.
I'll pray for your little girl, for your family to be complete & for your to feel better soon. Jax needs his Mommy to feel better rested...HANG IN THERE!
{{HUGS!}}
Lacey --- HUGS to you.
Oh you sweet, sweet lady, Lacey. You are so entitled to go through phases and I wish there was something I could do to help. I remember with my first baby sitting in the chair at night exhausted thinking, "Now I know why they use sleep deprivation as torture!" Everything is worse without sleep. I wish you a good night's sleep and only the best for your family. You will be in my prayers.
A stranger (Patty)
Hi Lacey, It is Joyce. I'm on hold with an insurance company at work so I'm trying to sneak in a few minutes to read the posts that Sarah glosses over when we are reading together - she just loves photos. I want to send you hugs and more hugs. This road is not an easy one for sure. Add in hospital stays and cranky little ones and your world can seem like it is ready to fall in. I hope you can get some rest. That and a hot shower always helps me. There are no easy answers but know that we are thinking about you and Jaxson and yur family.
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