Caden's latest hemotology apt.

Myprecioushearts wrote: I know I'm new so hope you don't mind if I go ahead and start sharing. Thursday was just a long day. Caden had his regular check up at the hemotology clinic. Poor baby....they had to draw his blood. Hemophiliacs are really hard sticks. This time it took three attempts to get any. His arms are going to be very sore. Once again, a hemophiliac has reactions to shots/blood draws. Severe swelling, knots, pain, more severe than the 'average' person having them done anyhow. Then on top of that you have to watch for a muscle bleed from them. Caden saw his hemotologist, his nurse, physocologist, physical therapist, social worker, reg. ped., and even a dentist. Wow....the dentist checked to see how he was handeling teething and if he had any bleeds from the teeth coming in. Which he's had some minor bleeding and severe bruising, which is normal for him. She ordered Amicar for us which is to help stop and control mouth bleeds. Good to have on hand. The social worker talked to us about our worry of CPS due to him being covered in bruises. Another part of hemophilia, he bruises so much and so easy. It's awful how beat up he looks now especially when he's not crawling yet. All he's doing is rolling on carpet + a blanket. She gave us her card and told us not to worry, she'd take care of anything like that. They also ordered us some medical kneepads to help save his joints some. Also going to have to look into the helmet, just in case. Not sure how I feel about that. I don't think I'll make him wear it unless he has a head trauma. We'll see though. We're new at this. Physical therapist noticed some one sided weakness which they are hoping isn't anything to be too concerned with yet. Everything else is on track so they aren't too worried about it yet. Hoping it's just a habit. Just something else to watch. Let's see...oh the regular ped. visit. A red rash showed up a few weeks ago on his face....ends up it's eczema. We're treating it with aquaphor for a week(I've been using it for 2 weeks now) and if it's not clear by next week they'll get him a prescription for it. Caden also finally had his 4month shots done as well. So he had 3 sticks in his arms for blood, 3 sticks for immunizations in his legs. My poor baby, my heart aches for him having to go through this. It's hard....I worry about how things will be in a few months when he's crawling and pulling up. Anyhow, he weighs a whole 16pds 10oz and 26" long. Friday he was awful, he's so sore. He's barely moving his arms and legs, he's keeping them drawn into his body. I know he's hurting. All i have to give him is tylenol and he has a gag reflex when it comes to medicine. Plus he's cutting tooth 5 & 6. He was up till 1am screaming last night. He hasn't stayed up past 8-9pm since he was a few months old. Thanks for listening. Sometime it's just hard to deal with, having something your child will suffer from for the rest of his life.......Well, he fits with the rest of our family anyhow right? Thanks again. ---Abbe

luvmykids replied:
Of course we don't mind! That's why all of us are here. Kylie has eczema too and the aquaphor really helps, so good luck.

And wow, you've already had to deal with a lot. I'm sorry it's been rough lately and hope it gets better very soon.

We're always here!

Freckled Momma replied: Bless your family for having so much to handle and worry about I am sure it's extremely hard knowing he's hurting without being able to do much for him. Feel free to vent here or on as much as you want We are here to listen and send you prayers and hugs

I have heard about this condition on some medical show on Discovery Health or something like that. Very hard condition to live with

MyBrownEyedBoy replied: Oh, I am so sorry to hear about Caden. My son Logan has a congenital heart defect that has led to 3 caths, and 2 surgeries before he was 15 months old. So, I know how having a sick child feels. Although, Logan, at least, only has to deal with pain after procedures, not after every day stuff. As for the medicine gag reflex thing, the best way I have found to give Logan meds is to lay him down with his head just slightly elevated, put the syringe inside his cheek towards the back of his mouth and blow in his face as I put the medicine in. The blow makes him swallow. I am sure you have already tried this, but just my 2 cents. Hugs to you and your family.

Myprecioushearts replied: Thanks for listening!

Kelly--What kind of CHD does your son have? My daughter has Transposition of the great arteries with a VSD. She's had 2 caths and 1 open heart surgery to patch the VSD when she was 2. She has a pacemaker now as well. I know how hard that is to go through. Thanks for the tip on the medicine, I actually have tried the blowing thing. I'll try that next time.

MyBrownEyedBoy replied: Logan has aortic stenosis with a bicuspid aortic valve. He also had a coarctation of the aorta. The coarc was repaired in March 2005 and in late October he had a Ross procedure done. They replaced his aortic valve with his pulmonary valve and put a tissue valve in place of the pulmonary valve. This means that as he grows up he will have to have the pulmonary valve replaced. Wow, sorry that I hijacked your post. Sounds like your family has quite a medical history.

Rileysmom replied: Wow, you've gone through so much with your kids...you must be a great mom!! While my son hasn't had any major medical problems at all I know how hard it is for a mommy when her baby doesn't feel good I hope everything works out for you and your family.

CAMSMOM1 replied: I remember reading your introduction when you first joined, and I was so touched by your story. All 3 of your children, have medical conditions. I know God has given you a especially warm heart, and love. You are a very strong woman, your children are so blessed to have a mother like you. I honestly mean that. Sometimes I find myself getting upset by Cameron's temper tantrums, or when he wakes up early in the morning. Your post really puts things in perspective.

I can not put into words how mother's like you, inspire me. So I am sooooo happy that you joined, and I look forward to reading posts from you in the future.

And know that you & your family are in my prayers and thoughts.


Ann

luvmykids replied:
Ditto!

PrairieMom replied:

C&K*s Mommie replied:

for me too. Ann, usually puts in words what I am thinking in my head, but it does not come out so eloquently.

Myprecioushearts replied: Kelly--You didn't hijack my post! It's nice to find someone who's 'been there done that' especially when it comes to health issues with your children. Sounds like your little Logan has been through a lot. {{heart hugs}}

Ann--Thank you so much for your kind words and the warm welcome you've given

To everyone else--thanks for being so kind and opening the door so warmly to a newbie. I look foward to knowing everyone here more. Thanks again for the support.

MamaJAM replied:

Please don't feel that 'jumping in' isn't welcome -- how else can we get to know each other and be there for one another?