Wednesday, Feburary 12, 2014

I am so sorry to all my blog fans that I have not posted in a while... So I have some weight updates first for you... When we got home from duke, she got the flu and still managed to gain 5 oz, making her weight 11.1... Well there is no assistance that we know of to help us get the fructose fee formula, so wic and our pediatrican put her on enfamil premature formula... All the nutrients and vitamins are so much higher in this, that putting her on it still makes us nervous... So the week of February 5, she was on the old formula (enfamil Lipil) and the new one ( enfamil premature) and we had a fabulous week gaining 10oz... Making her weight 11.11... Well, then as we thought we were on the up road we went to the doctor on Tuesday (February 11) and she didn't gain but didn't lose (11.11)... We want her on the old formula but fighting with our pediatrican to get approval cause we need a prescription.. They want her to be on the premature one more week... We are leaning towards a fructose intolerance.. What doesnt make since to us is that she can be really sick and eat only an ounce at a time and gain 5 oz but now she is healthy and eating 6 oz and doesn't gain anything... So that's where we stand weight wise... After we got home from duke, she stopped completely rolling over.. The early intervention to start her therapy came and evaluated her and said it's best to start occupational therapy first... She has no protective instincts, like if you stand her up and let her fall back she just arches her back and doesn't try to pull herself up... So her therapy will start Friday Feburary 21.... As far as the safety plan, nothing has changed..we still live with my mom at night and granny during the day... We have loved staying with some church friends and my dad, it helps give everyone a break.. I just hope they see fast that I would never hurt my baby, and that whatever it is, is in the female genes... Our boys broden and Bryson have been fine since day one... So that's the lasted.. Enjoy the snow and stay safe .. Love all you guys

Saturday, January 25, 2014

Man what a week... I will post on the blog weekly... The week we got home from duke I got really sick, and then maddie.. They kept saying it was just a bad cold but it kept getting worse and worse.. We went for our wednesday weekly check up and she weighed 10.12 ounces and that it was crucial she gain this week, cause it is our pediatrician license on the line... She also had her finger pecked for her sodium... I haven't received a call so I'm assuming that it's normal.. Well, she kept gettin worse and worse... So we went back yesterday an she tested positive for the flu and ear infection... Poor girl can't get a break... We met our social worker on our case for the first one wednesday... She is really nice... All we did was I signed the safety plan.. It says that me or Tim is never alone with Madison, supervised feedings, weekly doc visits, and home visit... Then I signed over all 980 pages of her medical records... We set up our home visit for this Wednesday at 330pm after her weekly doc visit.. We have held our weight strong at 10.12... Considering how sick she has been, I'm thankful she hasn't lost any... I just pray that they give me a little lee way again, cause not much I can do until she gets her appetite back.. We eat 2 oz about every 2 hours.. I will post after our home visit on Wednesday.. Thank you guys for continuing to read and your patience

Sunday, January 19, 2014

Well, we got to come home Thursday, but we are not allowed to be alone with Madison until the investigation is complete... We have to have a third party with us at all times, and it can be anybody just as long as it's not us by ourselves with her... The social worker will come over one day this week to do a home visit.. We took her to the pediatrican to weigh her to get a base weight.. And she was 10.12 on two different scales... We found out that her formula isn't covered by insurance and it's a 100 for a case which last 2 days... Our pediatrican is bending over backwards to help us out..we have been staying with mom and Amy... Then figure out the rest of the week when it comes... And now I have gotten really sick, so that just adds to the pile... Thanks everybody for everything

Wednesday, January 15, 2014

Well, as most of you already know... Child protective service and social services was called on us today... The doctors came in this afternoon and said that since all these changes has happened since they took over, that I wasn't properly feeding her at home... Oh it was so upsetting... So we told that we didn't want anything to happen until, Tim and both of our moms got here... They got here and we had a long with the nurse manager and the charge pediatrican... Tim called our insurance and our pediatrican at home, and we told them we have nothing to hide but that there was no reason to blame me until proven otherwise... We made the offer of having a home nurse come and watch, and to have social services come to our house and do whatever they want or need to do... So, I think we will get to go home tomorrow after the doctors get in touch with our pediatrican and social services... It's hurts so bad to be blamed, and it just doesn't make sense like why of a sudden now... I understand that they are doing this to protect her, cause I'm sure they do see cases of neglect, but it doesn't make sense why see still loses weight durin the day.. Yes, she gains it back and plus a little back over night but she was doing that when I fed her.. Why didn't UVA or Roanoke get CPS involved, obviously they think I'm a good mother, and why would I feed her for a month and just stop... On a positive note, that they will see and monitor her at home and if she keeps gaining then everything will go away... If she keeps gaining, then it's a possibility her kidneys had fixed themselves, or a fructose deficiency... We will keep her on fructose free diet for a while and see.. We may never know... The goal is that we are going to cooperate with them and prove that we are good parents, and that we will never hurt her... But if she doesn't gain, then they can scratch us off and start from the beginning... I knew when they started taking my rights away little by little, that this was going to happen... I respect that they have to keep her safe, and that she is number one but I would never hurt her and I would do anything for her.. Anyhow her fluid test came back normal, meaning she isn't retaining any extra fluid... She. She did gain 4 oz (10.8) but lost 4 (10.4)... Other than that, that was my day... I hope everyone is safe in the snow and staing warm

Tuesday, January 14, 2014

For some reason, this little girl didn't sleep at all last night...I dealt with her till the 3am, then she hung out with the nurses so I could get at least 2 hours of sleep... I'm hoping for a better night... She gained 4oz this morning (10.4), and tonight for the first time in a while we have maintained our weight... We didn't gain but I was so excited that she didn't lose... She does NOT have cystinosis, which is a blessing.. That is a complicated disorder... We are still waiting on her fluid retention test... And the micro ray test from UVA... That is a test that tests different types of gene mutations, instead of just one like for cystinosis... Both of these should be back any day... Her heel was pricked this morning to make sure her sodium is still normal.. It is but is down to 138.. So we have to get it checked every day to make sure it doesn't get to low... Tim called the doctors this evening to see what our next step is and apparently we are having a meeting Thursday to discuss it.. It will be me, Tim, general pediatric doctors, genetics, and kidney doctors.. I don't know much about the meeting cause they didn't tell me about it this morning... But thursday is the best day for Tim to come.. They also said that she has made progress but that she is still small, so I think they want to keep her several more weeks to make sure we progress.. I will let you know more when I know more...

Monday, January 13, 2014

Before I begin, I want to apologize that the blog is repetitive that it gets boring...i know it's not fun reading the same thing over and over, but I want to thank you from the bottom of my heart for taking time to read it... It means so much that everyone is thinking and praying for us, and again I am sorry that it gets boring to read.. I will hopefully have the results soon, and then it be different.. But in meantime, thank you for your patience... We had a really good night..after all our visits yesterday, Maddie fell asleep for the night about 8pm... She had to eat at 9pm, and was very unsuccessful... We were putting her up in the air, a cold wash cloth but nothin woke her up... It took her an hour to eat 3 oz, and then at midnight 2 oz.. I just really wish they would let her sleep..she now has started to not eat as much and is throwing up quite a bit of it... No fevers and she is happy, I think she is gettin overly full and just spitting it all up... She did gain 6 oz over night, making her weight 10.3, and I'm pleased to announce that even though we lost 3 oz tonight we are still 10 even..her urine is normal now.. It was at 5 yesterday and mixed with her poop was a total of 8.. She was pricked this morning to check her sodium and it dropped down to 140, we are both happy that she does not have to drink salt water anymore... We had therapy today... We took a break from her holdin her weight, to working on her reaching by laying her on her side.. We did work on holding her hands and letting her pull up as much as she could.. This also helps her keep her arms straight.. Her shoulder muscles are doing good cause she will keep her arms in front of her.. But we still struggling on keeping her arms straight.. Thanks again everyone for reading... We love you all

Sunday, January 12, 2014

Our night was normal...she sleeps so hard that she only ate 2 oz at midnight... And then downed all 6oz at 3am...then we were up for the rest of the day... I did forget to mention last night, that because her sodium has been normal for a while, they decreased her supplements to once a day.. But today her sodium jumped to 145, which is the highest it can go, so she will be taken off of them for now...she will have to be pricked every day to keep an eye on it... She weighed in at 10.1 this morning (5 ounce gain), but like normal lost 4 ounces tonight (9.13)... We are hoping that results will be in tomorrow..but that's all the medical stuff... We had two surprise visits today.. The first one was my grandparents ( granny and paw)... We had lunch, and just sat and visited for a few hours... I know Madison was quite excited to see them, as was I... Our second visit was my dad and stepmom, Christi and bryson..I was so excited to see all of them... We threw money into the water in the lobby... Had a snack and got to drive in a car... We had a lot of fun... He got to meet dr. Kolmer, who normally takes her for a walk everyday to give me a break.. And she loved him...it was a busy day for this sweet girl... Seeing everyone today was worth the wait... We are blessed with such great family and friends