Tuesday, June 1, 2010

Tired and it's only Tuesday

That would be in part due to Mr. Liam deciding last night that, he just wasn't tired mommy... and then staying up unable to go to sleep until after 1am. We have a run on insomnia in the house, unfortunately I didn't get it! Riley has not been sleeping at ALL during the day and was awake crying several times last night. She has been having her up and down temps all week too, up being into the 101's. This is usually our slow progression into "something" whatever that may be with her. She has no symptoms as usual and her four molars, that have been coming in over the last month seem to be in, so I'm at a loss. It will reveal itself before to long, I am sure of that at least. It always does. Of course her Broviac (central line) is still giving us trouble and we couldn't get any blood from it on Friday. We did do a fingerstick to check her CBC and her white count was up slightly which is good considering it was only 3000 before and her H&H is up almost a point which was good so we will wait. With the holiday her pediatrician won't be in until Thursday and I don't want to deal with anyone else. So, I'll just take getting yelled at when it comes later in the week. As I say Denial Island is beautiful some days!

Liam was probably awake all night due to him coughing his head off every time he would start to fall asleep. I gave him all his breathing meds and cough meds and a double dose of melatonin to no avail. His croup seemed to also return within days of his steroids being done. Uggghhhh! That does not make me happy since Liam has had croup a gazillion times and that hasn't happened before. His doc didn't believe it this morning and thought it was just his nose causing the cough and the croup must be over. Riley must be rubbing off on him ,since sure enough as he was writing the scripts Liam started barking away, just to prove him wrong I guess. So, even higher doses of steroid now and abx since there is green coming from his eyes, nose, and lungs. I am just praying that gets all this mess under control by Friday. They will do surgery anyway unless he has significant croup since he is always sick and there is never a good time. So, much for the pneumovax.... They called me to do his pre-op stuff today. I requested my favorite anesthesiologist since it's being done at my hospital(we LOVE our ENT here) and I am really hoping he is working that day. He used to be a pediatrician and did my c-section with Riley. He is really good and Liam is known for not doing good with anesthesia. I just hope this finally helps a little... This poor kid has to catch a break with these infections they are really taking a toll on him.

We are now part of a program called the CARES program here in Brevard. They have a "wrap around" system of support for the family from the community and ultimately make sure the family is getting all it's needs met through different agencies in the community and has a support system. You have regular meetings with them in home to make sure all your needs are being addressed and nothing is falling through the many cracks in the system. That's how our care coordinator got Yellow Umbrella involved. They provide parenting support as well as help with certain bills and household items and they are getting us DIAPERS(Woo Hoo!!) as well as just supporting the family with anything they can. This is such a wonderful program offered through CARES. It's sad that these programs are actually geared towards children who have been abused or neglected and trying to keep these families together and out of the system. For family's like our though, just in desperate need of support and a little help there is no one else. They ended up being sort of a catch all program but they were nice enough to never think of turning us away. We did have a little wait to get everything started but within days of seeing our coordinator she had Liam's daycare taken care of and they are able to get in home counseling for Wil and I to do together as well as contacting Yellow Umbrella. She is also working on several other things for us. It's so nice to have someone who looks at the family as a whole and makes sure everyone is being taken care of. We are so happy and hoping this will really be a huge help and take a lot of stress off of us!

We have a crazy week this week. It started with a hurried visit to the Pedi this am so we wouldn't miss morning clinic. Followed by a 3hr meeting with the lady from Yellow Umbrella. Then of course the normal plethora of phone calls and Riley cuteness. Then I had to go do my ton of errands including listening to a lady laugh at me when I went with the script to get Riley's customized medical stroller ordered. All because she found out Riley CAN walk. HELLO... She needs something to hold all her equipment and bags that are attached to her! She's one... it's not like she can walk everywhere when we are out of the house even if she was completely normal. She says Medicaid wont pay unless she needs it to sit in at home.... seriously? Then off to my Dr. appt and to get Liam. We have our appt with the geneticist tomorrow for both kids. He has been on medical leave for 3mo. and hasn't seen the kids since Dec/Jan. It's going to be a long appt. It has taken me 2 full nights to prepare all 3 pages,per child, of medical issues and things that have happened since he saw them last. We then have to go to Orlando on Thursday too since Riley's follow-up's with Nephrology and Immunology are that day. Then of course Liam's surgery is on Fri. and Riley will have to squeeze a pediatrician appt. in on Thurs. or Fri. too.

We did have one bit of awesome news today. The nurse from the genetics office called me and apparently she had called a few weeks ago and left a message but on my other number, yeah the one I forgot the password to the answering machine. She said she had been able to get Riley's muscle biopsy sent off for the ETC testing over 2wks ago!!! This is so good, that means we should hear back in about 4weeks. It doesn't seem like that long since we've been waiting for over 13mo. since her biopsy for this testing to be done and it's actually going to finally be done! PLEASE pray we get some useful info from this since it is important for the whole family! I'll post again after our appt tomorrow since we will hopefully have found out something useful...

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