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

Saturday, January 11, 2014

Maddie has turned into such a heavy sleeper... She doesn't sleep much during the day but I am pretty sure she would sleep all night if she was allowed to... She had extra blood work done this morning, other than her usual electrolytes test.. I forgot the medical term but it's to check to see if she is retaining extra fluid... I have a feeling that it will say she will because they did it right after her 6am feed... They have to send it to an outside hospital to test it but we should know by Monday, as well as the cystinosis test... Other than that, it's been a calm, rainy, lazy day... She was 10 pounds this morning ( 6 ounce gain), but then we lost 4 ounces this evening (9.12)... Her urine output was 9, and with stool makes it 12... So we are almost normal... I just don't know that her pooping so much is normal but they haven't said anything...we are gettin so homesick, and it's hard that I don't get to see Bryson this weekend... Oh and before I forget, cell service is terrible here and my phone doesn't always ring, but our room phone number is 9196815105...call anytime

Friday, January 10, 2014

She is getting harder and harder to wake up at night... I wish even if it's every other night just to let her sleep... I understand she needs the calories but she need sleep just as much, you grow when you sleep... She has been pooping like crazy these last two days... But we found out that her urine and stools were a total of 14, so her Urine is getting super close to normal... We haven't heard any test results yet, but we think her pooping so much could be a reason for her weight loss... She is weigh in this morning at 9.10, which is still an ounce lower than yesterday morning... She didn't lose or gain today, so we have maintained our 9.10 weight... They did try to blame me on giving her extra water... They said her urine is still diluted.. I have asked an asked the nurses to help me give her a bath and they always forget... So I decided to give her one this morning..well I didn't have a wash cloth so I used a bottle to was her hair... The doctors felt that her hair was wet this morning when they came in... I didn't realize they took the bottle that I used for her hair with them this morning... They came back an hour or so late and said "I saw this bottle with water in it, are you sure you aren't giving her water" and I explained that I had no other way to wash her hair and I asked for help several days and I couldn't wait any longer.. They replied "ok, her hair was wet, but we want to ask to make sure.. Can we take your bottles and you can have them back at discharge, this way it's all on us and we can rule you out"... I said ok, but was so hurt... I really hope that they see I am not doing this to her... She has some rare disorder that no one can figure out.. But I hope that this proves once and for all it's not my fault... We did have therapy today... Her shoulders and reaching is gettin much better... Today we work on leaning forward and putting weight on both her arms, working on pulling up, building tummy muscles... Not sure if we will receive results this weekend or not.. But I'll be sure to post when I know.. Just pray for us.. I have been so positive throughout this whole journey till now..

Thursday, January 9, 2014

We were up most of the night, which I figured we would be since she decide to sleep a lot yesterday.. I feel better after talking to the doctors this morning... We haven't heard the results of the cystinosis test, but they also think that it still could be the fructose deficiency, and now maybe her body is finally able to adjust to the formula since she has been on it for a week... Or that her kidneys could of got and "injury" by being on the 27 cal diet... Thy explained that all the nutrients in the high calorie makes the kidneys work harder, and could of cause some muscle loss making the filter not strong enough to do its job... So now being on the 24 for a week, maybe her kidneys are finally strengthening... It's all to soon to tell... She did gain 4 oz this morning, making her weight (9.11), but for the first time in 4 weigh ins we lost 3 oz (9.8)... Everything is still up in the air since we don't know any test results but made me feel so much better that they wasn't trying to blame me... She did have her electrolytes checked again this morning cause her sodium went up... And they wanted to make sure the supplements wasn't to high.. But it did come down.. So we will be on them a while longer... One of our favorites nurses came in today and played some songs for her on her day off.. She got to play the bells and she loved it.. To hard to get a picture... We have had a great day.. Oh I almost forgot, her urine was at 12 yesterday, so that's good that it dropped lower.. But still high.. Thank you everyone for all the support.. We love you all

Wednesday, January 8, 2014

All I can say is that I am glad I have a good support system... Today has been aggravatin, that we have barely left the room all day... I feel hurt that I can't feed my baby... I feel like they are trying to blame me especially since we have had big and different changes today... All they say is that they need to make sure every drop is getting into the bottle... All you got to do is pour it, makes me feel like they think I'm doing something... She weighed in at 9.5 ( 11 ounce gain), which sounds impossible to all of us except the nurses and doctors... The tonight she gained 2 ounces (9.7).... I do nothing different and I don't understand why her urine has gone down to 14 and why she gained so much when I have done nothing different... They said it will take several days, but it hurts my feelings tremdously... We had therapy today... Adding arm circles to the rest of our exercises... She is starting to bend it more, so I can see that therapy is helping a lot... The other changes were that she hasn't eaten her whole bottle since 6am... Her 9am and noon feed, she ate 5 ounces and her 3pm feed only ate 3 oz, and this past feeding she at 4 1/2oz... I just don't understand and I don't want them to blame me.. I would never hurt my baby... We decided that the hearing test is not important enough to sedate her and do it, so we are going to scratch that... We are going to talk about maybe weening her off the sodium supplements since her electrolytes have been good for a while... And hopefully we will know some test results tomorrow... But that's all for now.. Just been a bad 5 month birthday

Tuesday, January 7, 2014

We had a normal night... Eating good and peeing just the same... Her urine output stayed consistent at 18... She gained up to 8.14, a five ounce gain and then like normal dropped this evening to 8.10 ( four ounce loss)... It's been an aggravating day... The nurses have to make her bottle and watch her eat... Her formula is pre-made, and all you have to do is pour it in a bottle... So I don't see how they would do it different than me...but other than that nothing happened today... We went and played in the playroom, till she had to mark her territory and pee all over the place... Her nickname is maddie moo... A new resident thought we were saying Maggie.. So they were calling her Maggie moo after the ice cream shop... So when we corrected her it kind of stuck... So that's all for tonight... Please everyone bundle up and keep warm

Monday, January 6, 2014

Last night was so weird, it has us all puzzled... Since we have been here... Her urine output has been our big issue... Well last night, she didn't pee at all from her midnight feed to finally sometime during the 3am feed... We had the same nurse last night as we did the night before, and she thought it was weird to... The night before, she peed like a fountain, having to change her bed and clothes at every feeding, then last night she didn't pee at all... We can't seem to keep a happy medium... So the doctors had to come in at 3am and 6am to make sure she was still hydrated... And praise God that she was... She finally started peeing like she normally after her 6am feed.... Her urine dropped to 15 overnight ( which is better than it has been), but rose back up to 18 over the course of today...she did gain 4 oz, making her weight at 8.9 this morning, and was very pleased to see that we didn't lose weight, but we didn't gain either (8.9)... Where her right arm/shoulder muscle tone is low, we are going to start getting therapy every other day... Today we did shrugging exercises... Grabbing under arm armpit and moving her shoulders up and down... She did not like that at all, but we got to do it... The hearing test was attempted for the third time, same ol same, she did not lay still enough... So i don't know if thy will try again or if they will let it go... Then when it rains, it pours... Bryson fell at hollys and cut his chin... She had to go to the emergency room to get it glued together... Surprisingly he was still in a good mood, and don't cry other than when they held him down to glue his cut together... I have some tough kids, I could not ask for anything more

Sunday, January 5, 2014

Well our night was interesting... Every time we woke her up to eat, we had to change her bed... So I knew that this was not a good sign... Sure enough her urine output went back up to 18... She did however gain 3 ounces his morning (8.9).... We did decide that since her electrolytes have been normal for the past few days, then we will check them every other day... She didn't get them checked this morning, so we will prick her in the morning... She did lose a good amount of weight tonight... We dropped down to 8.5... Which is pretty close to admission weight.. With her output of urine so high, she is at risk for dehydration.. So the doctors came in just to check her heart rate and fingers, toes, and movement to see if she was dehydrated.. She's not, so we will see what the team will say tomorrow... That's all the medical stuff... Mom, Tim, and Bryson came up today... And because it's flu season, Bryson wasn't able to come to Madison's room... We are allowed to sign her out and walk around, so we all enjoyed lunch together... I wanted to spend time with Bryson, cause it's been 10 days since I have seen him.. So mom stayed with maddie.. And me, Tim and Bryson went to a kids museum called marbles... They had a big farm that he played in, an ambulance, fire truck, and bus that he got to drive... We went and played vet, and took care of animals... We spelled some of our name in the classroom.. They also have these water tables, that he was able to play with boats and ocean animals... Then we went upstairs, where he got to make pizza, play with balls, and climb into a jungle Jim with a slide... There was the hardware part, that we got to build race cars and then race them (Bryson beat daddy, if i might add), then we finished up the day, making maddie a picture and playing in the toddler gym... It was the best 5 dollars I have ever spent... I did feel bad for mom, cause Madison spent the whole time I was going crying... She finally calmed down, when she was pushed in a stroller but I felt so bad... Mawmaw brought her an aquarium, and she loves it.. I really don't spoil her, it's just for the past two months, I am pretty much all she sees... But it was a great day, and I'm thankful they got to come up

Saturday, January 4, 2014

Madison had her midnight feed around 11... So we were allowed to sleep till 4.... It wa nice sleeping all that at once... We had a fairly lazy day... Not much happened... She had her electrolytes checked and so far they are all normal... Her weight was ify this morning... She weighed in at 9 pounds this morning.. Which is a 9 oz gain over night... So when the doctors came in, I asked them about it and they gave me some good news... They told me that her urine had come down from 18cc to 10cc... It's still really high but it's an improvement... And since her urine output came down, then it was possible that she did gain that much, since she didn't pee as much out... I hope that makes sense to everyone... However I won't know if her urine went up or down till morning, but when she was weighed tonight, she was back to 8.6... Meaning she lost 10oz or her morning weight wasn't accurate and she only lost one ounce from yesterday.... I probably should of had her weighed again... But we were all hopeful that since her urine output went down, that she was retaining her food but that doesn't seem to be the case... Other than that, we are pleased to see that our favorite doctor is back, so we spent time walking with her... She helped me give maddie a bath, and watched her so I could eat..me and Madison worked on her therapy of her arms... And I watched her roll over at tummy time... She has been in a great mood today, and we actually took a two hour nap this afternoon .. It's been a great day.. Even greater when I see Bryson tomorrow

Friday, January 3, 2014

We had a typical night... Feedings every 3 hours... We did have to go walking the unit about 4 am to finally get her back to sleep after the 3 am feed... She did good on the scale this morning, weighing in at 8.8 (2 ounce gain)... She didn't do to hot on tonight's weighing; she lost an ounce (8.7), but it's an overall gain for the entire day, which is good.... Not much going on these next few days, but she will have a heel prick every morning, so we can keep track of all her electrolytes... They were still normal today YAY!!!! The nutritionist came in and mentioned putting a feeding tube at night... But she got really sick on that at Roanoke and she wants to eat, so we will see about it... Even the doctors don't think it's necessary, so it's up in the air... We will see what her weight does over the next several days.. She is starting to spit up a lot more so I'll have to talk to them more tomorrow about that... We were unsuccessful again with hearing test... I don't know how they are going to get it, but is important that it gets done.. Because apparently the hearing and kidneys form at the same time in utero, and because she had a lot of fluid when she was born and failed the newborn one, it's important that we check again... She did go back two weeks after she was born and passed with flying colors but they need to redo it again to make sure there aren't any issues... We did get some physical therapy again today... Her left shoulder muscle is doing better, but the right one not so good... She really likes to keep it straight out on the side and pulls against us when we try to move it... So got to continue working hard on that... And extra tummy time, makes her bend it to

Thursday, January 2, 2014

We had a normal night... She has to get up and eat every three hours... But she went back to sleep each time... She had her electrolytes ( glucose and sodium) checked again this morning... And they are normal still... Because her glucose was low yesterday, she had to be pricked till midnight last night just to make sure... After 6pm yesterday it has stayed normal... We have decided since we will be here another week at least (I'll explain in a minute), not to ween her off the sodium supplements yet, this way we know that her sodium continues to stay where it's suppose to.... Since her urine output hasn't improved very much, we know that this is not a protein abmorality, but they know for sure what ever the problem is has to do with her kidneys... So, she was tested for this rare disorder called cystinosis... It is quite complicated so I have attached the website for more information... They had to take 5 ml of blood, and send it to the Texas genetics lab... We have to stay till the results come back, which takes about a week... She has to be monitored very closely if she was to have this, she shows all the signs for it, but research has improved over the years, so it's kids have a brighter future... Since no protein issue, we are still on enfamil formula but at a 24 calorie, we still have to deal with the the weight issue, so we trying this again before the fat tablet... She weighed the same this morning at 8.6, and tonight she gained an ounce (8.7)... She has been very fussy today, so we spent a lot of time, chasing dr. Jenkins down the hall... Everyone is just in love with my baby... I have to admit she is rather cute. Go online to the website: Cystinosis Research Network (https://cystinosis.org/what-is-cystinosis/symptoms-treatment)

Wednesday, January 1, 2014

Happy new year everyone.... We had a fabulous night... She slept from 10 to 3am, then 4 to 10am... She had labs done again to check her glucose and sodium... Her glucose was low and they were hoping that it was because she went so long without eating, but it didn't seem to be the case... She has had to be pricked before every feeding to check on it, and it has been low all day except at the 6pm feeding, it was finally normal... She has to be pricked her next to feedings just to make sure it stays normal..since getting her sodium supplements, her sodium has been normal... So we might try to ween her off of them... Her urine concentration has come down, meaning she is concentrating a little better than she was, but it's still high... They are thinking that the proximal tubule (which is the part of the kidney that filters) is not all the way formed, which we have to talk to genetics more about that... She has done good on the new formula (enfamil lipal), it's to soon to tell if that is helping her urine output... Her weight this morning was back up to 8.8 ( which was a 3 oz gain), but then tonight, she dropped down to 8.6... The only other thing that happened today was her hearing test, but the computer kept malfunctioning , and after 30 minutes of trying Madison was done.. So we will attempt again on Friday... She has stumped everyone so far... But they are working hard and I love how the doctors come in more than once a day...