Random

I had a pretty quiet weekend so here are just random pix of my kids that I think are amazing. Enjoy!

Nursing

I am very happy to report that the past three days have been awesome for Addysen! She has two nurses that are caring for her. One comes M-Th and the other on Fri. Let me just tell you that this little girl is so blessed! They both adore her (how could you not???) and I am so comfortable at work knowing that she is being very well taken care of. They are able to administer her meds and do her breathing treatments and I know that everything is done correctly and on time since I have it in writing! I am still hoping that she can go to daycare two days a week but I haven't heard back yet.
Addy had her first OT session since January 30th today. Delene (her OT) said that she did really well. She even wore her AFOs during the entire session without too much distress! They were on for a little over an hour and her nurse said that when they came off there weren't any red marks from irriation at all. That's good!
I am suffering from a major head cold! It started yesterday and I felt horrible last night. I am a little better today but so bummed that I am sick. I have washed my hands more times in the last month than I have in a very long time and I get sick. I don't think it could have anything to do with being totally exhausted and stressed out for the past three-four weeks do you?
Scott headed to St. Louis tonight to meet up with his friends for a computer weekend. He wasn't going to go since I am sick but I told him he needed some relief too and I will be fine. So I am a single mama for the weekend and plan on being a bum. I do have to work for a couple of hours tomorrow morning at an indoor garage sale but that's not a big deal. We are expected to get 4 inches of snow tomorrow too. It was over 70 degrees yesterday! You gotta love the Ozarks!

Up about a Pound!

I had to post pix of Addy first thing this morning, she had the cutest bed head!! We went to the pediatrician this afternoon and her central line has now been removed! Yeah! You can also see that the bruise and scabbing on her head is a lot better too. People keep asking me if she fell and hit her head. Uh, no, she's immobile! She also weighed in at a whopping 19lbs. 5 oz. so she has just about put back on one pound of the three she has lost this month. We are to continue her 20 hour per day feedings for another week. He doesn't want to put too much on her system since she is so fragile. So maybe by next weekend we will be able to start consolidating down again.








She really had a good first day with her nurse. Some people have asked me about this nursing situation. Okay, this may be lengthy but informative. When we brought Addy home I asked about home health and the dr. said that she didn't need it because anyone could be taught to take care of her (she had O2 24/7, colostomy and mucous fistula, and fed through her j/g tube 20 hours per day). He also said that it would cost my insurance company way too much money. Okay, so we trudged on and found a babysitter. Many people ask what the challenges of having a child with special needs has been for us. Childcare has been the biggest concern. It was very difficult to find someone to care for Addy with all of her needs, but fortunately last year we did. As I mentioned yesterday, this year has been a different story. (BTW by years I mean August through May when I work). Fortunately she did get into the daycare the beginning of January, so once again we found a perfect place for her. Well I found out this week through the doctor referral and whatnot that Addy actually would have qualified for nursing all along since she has chronic medical needs. Medicaid is paying for this. Addy does not qualify for Medicaid due to our income, she qualifies in Missouri because she has Down syndrome. Her Medicaid (supplemental to our private insurance) is covered through her adoption subsidy so she would have gotten it either way. When we chose to adopt a child with special needs. I knew nothing about any of this. We did not adopt Addy for the "benefits". I got upset when I found out that we could only get help for Addy since she has Medicaid. We just wanted a couple of weeks to get Addy healthier before going back to daycare, which was ordered by the doctor. I wondered where is the help for the typical middle class family like ours? What about all the millions of people that need help and can't get it because they make too much, but not enough to pay for thousands of dollars in care a year? If she didn't have the MC then we would be out of luck. No nursing, no respite care, no nothing. Sad isn't it? Well, so many people are very angry with Addy's doctor since he didn't pursue this when we brought Addy home. Yes I was angry too since paying her childcare has been unbelievably expensive (however since the adoption, it is covered by subsidy), but we knew we would be paying for childcare, but it has been SOO stressful. Finding someone that can take care of her has been tough. But I am a Christian and I am choosing not to be bitter, or angry. I am grateful. I am grateful that my child that pretty much has zero to no immunity will now be cared for in our home with a qualified person to take care of her medical needs (not just feeding). We are still very hopeful that she can return to daycare to socialize and be exposed to some germs to try to build an immunity, but we just don't know right now. I am thinking in another couple of weeks we will be able to try a couple of days a week. So now, we just thank our good Lord that he has blessed this child by providing what she needs when she needs it.

Feeling Good and AFOs

Well we are finally getting re-settled back into our family routine. We had a good weekend at home and I know Addy was very happy to be back in her own bed without those pesky nurses coming in every few hours! We went back to the hospital yesterday and had her central line checked and flushed. It looked good so that was no problem. We will have it removed in the pediatrician's office tomorrow. We went today and picked up her new AFOs!! They were ready a few weeks ago but a certain little someone was in the hospital so we didn't get to get them until today. They are so cute with the multi-colored foam and purple velcro with princess ribbon on them! It's amazing that two tiny pieces of plastic with a little velcro and foam costs over $1500!! Thank God for insurance! Since Addy's braces make her feet quite a bit bigger we headed to Shoe Carnival for new tennies! The three other kiddos needed new tennis shoes, as did I so it was an all or nothing deal! I had to get Addy a size 5 1/2 shoe! Her old shoes are size 3 and they were still a little big, check out the difference! We are going to be putting her in her braces for about an hour and then give her a break a few times a day and then we will increase the time she has them on. She has hated them so far, no big surprise but we are hopeful that they will help her with weight bearing on her legs.



I do have some exciting news! Addy has qualified for in-home nursing care! I tried to get this for her when we came home from Minnesota with her but was told that she wouldn't qualify. So fortunately last year we had a wonderful person that kept Addy in our home until April when she got sick and had to have surgery. She ended up moving so we had to find a new person to care for her this school year. I interviewed over a dozen people and there were people that I wouldn't have left my dog with! I thought I found the perfect person, unfortunately, she totally had me snowed and we ended up having to let her go in November. It is very hard to find a reliable, honest, and trustworthy person to care for your child with special needs. Fortunately Addy was accepted into a local daycare here in one of our local churches. They are awesome and Addy is in the infant room, which is totally appropriate since she is developmentally around 9 months. However, since she started in January she has had a sinus infection and then she had the tummy bug and the rest is history (she hadn't been sick for 14 months prior). So the doctors in the hospital wanted to have her stay out of daycare for a couple of weeks after coming home to help build up her strength a little bit. It was a nightmare trying to find respite care or home health help for her. Yesterday I found out that she is not only going to get care but a nurse to care for her in our home! She qualifies for this since she has continued medical needs, one of them being her G-tube, so yes, she would have qualified for this from the time we brought her home!! UGH! I have decided not to be bitter about this (even though I am a little) but just be extremely greatful for this awesome blessing for Addy. This is taking a HUGE stress off of us. Scott and I both have to work. If we could afford for me to stay home we would, but unfortunately we can't so... I am soo thankful for this wonderful service! It is so scary to see Addy get so sick so fast! Our plan is to just have to use this for a short term, however, the doctors have asked if we would consider just sending her to daycare a couple of days a week. Not that we can guarantee that there won't be germs there those days, but that way she will get the benefit of the socialization with the other kids, but not be there so much that she is exposed to everything. So I left a note for the director today and I will find out shortly if they will be able to move Addy to part-time. I really don't want to lose her spot, she does benefit from being there, she has learned so much already but we do have to put her health first. So please pray that things work out so it best benefits Addy and her health and development.

We are HOME!!!

You mean I get to come home??? YEAH!

After spending the last 10 days in St. Johns after being home just four days from the first trip we are home! I am really praying that we are home for good now! We got home about 6:30pm and are so happy to have our family back together! Jarika is cheering in Reeds Spring so we won't be totally complete until later but this is a start! Addy came home with her central line still in place. We go to POPS (Pediatric Out-Patient Services) on Monday to have it flushed then we go to the pediatrician on Wednesday to have it removed. She is still on Flagyl for the next eight days and we are continuing breathing treatments every four hours. They also sent her home on continual feeds which is a drag, but I was told we can start trying to consolidating them this weekend if she appears to tolerate it ok. We are supposed to call the floor if she has any trouble and the doc will admit her again for observation so we have got to pray that she can handle feedings again! Fortunately she was able to stay off of O2 all of last night and today and only alarmed a couple times last night but Scott said it was because she had her leg all bent and it wasn't reading well. Once she straightened her leg it was fine. We never did find out what was wrong with her left leg, most likely a pulled muscle or somehting. Who knows, we are just very thankful that it seems to be just fine now, praise the Lord! I still haven't heard whether or not she is going to get respite care for the next week or so but Addy's nurse case manager is really working on it. I sure hope so, it will be a huge blessing. That way she will be able to stay home from daycare a full week to build up her strength and immunity again before going back. I know she must miss being around people that aren't nurses or respiratory therapists! She was very happy to be home with her brothers and she is singing herself to sleep in her own comfy bed! Thankfully Scott will able to do the same tonight too!

Playing with her favorite toys, an awesome sight!

Do I know you?

It was cute watching her move both of her feet around and around. I think she was amazed that neither one was hooked up to the Pulse Ox or had a name badge on them!

Not home yet

Well we had a set back again :(. Addy is now on 1/4 liter of O2 she is still not maintaining her sats on room air. She had a really good night last night and slept well. She threw up twice this morning so they took her off of her feeds and put her back on her IV. They let her go 8 hours off of feedings then put her back on tonight about 6:30 at just 20mL an hour and they will see how she does. The GREAT news is this:
She was VERY smiley and happy today! She had a sparkle in her eye and loved that I brought her some of her favorite toys! She played with them and did Pat-A-Cake!! Yeah! I am so thankful for that! Now if we can just her lungs stronger so we don't need O2 and her belly handles feeds we will be good to go! I am so thankful that so many people are praying for her. I think just about every church in our community has her on their prayer list. This is so awesome to know that people that don't even know this precious angel are lifting her up to our Lord to ask that she get better! I love that I have so many people that I have "met" through blogging that keep track of how she is doing and are praying for her as well. I would link to their blogs like so many do to ours, but I have no idea how!! Someone tell me and I will do it! So I ask that prayers go out for Jaxon, he's got RSV too and will probably end up in the hospital, click on Jaxon's Fight on the left of my blog and you can check on him too.

Yep, I was right C-diff

Look who's moving her left leg!!!

I knew she had it, I'm glad I requested another stool sample. Addy tested positive for C-Diff so she is now on Flagyl. I am so hoping that this helps her poor little bum! She had to go back on O2 again today. We tried taking her off for awhile but she had to go right back on, kept dropping into the 80s. I did get some smiles out of her today though! She was fine for my mom all day but cried for me. I''m trying not to take it personally! I have a feeling that we may come home tomorrow or Friday. I imagine it depends on her O2 sats now. If we have to come on O2 I guess we do, I just hate that! There are many worse things and it's not like we're not used to it, but it seems like such a set back for her. Please continue to pray for comfort for my little girl, I know she feels crappy and is downright sick of it. I don't blame her poor thing.

She is so sick of breathing treatments!

My wonderful friend Susan and I were talking today and she was telling me about something Beth Moore had said (if you don't know her ministry, she is awesome!) she was talking about how bad things happen and we ask God why?? But then she reminded us that bad things happen but God is with us through all of these bad things. I know He is with me, if He wasn't I would be in the looney bin by now. I am stressed beyond belief but I know that He is going to get me through. I pray that we do get to bring Addy home very soon and she can be more comfortable and content in her own home with all of her things and her "people". I thank everyone for their support, I feel guilty asking for prayer when I think of Zoey and Jaxon and Parker and Emma and I feel like such a wimp when we are going through much less than what their families are.