Day of life #84- 12 weeks old!

Madeline is 12 weeks old today!

Overall she seems to be doing well. The last two days had us a little nervous as yesterday she ate very little (around 4 oz all day) - And she was late on many of her medications because she would not take her bottles (which had the medications mixed with milk in them). She also slept much of the day and seemed a little red faced.

However today she is eating- except she has been puking curdled milk and she slept from 1 30am-6am, 630a-9a, 10a-1p, and 2p until now- It is worrisome that she is sleeping so much - she also had a visit from the nurse and turns out she lost 3 oz- of course that could be a normal newborn thing but it just makes us nervous after everything she has gone through. Her BP seemed to be normal however so I suppose that is good. We will just keep a close watch and see how things go- '

Madeline has a physical therapist appointment soon so we will have a chance to really find out how she is doing developmentally so that is good- She sure is smiling a lot more now which is awesome and exciting- we think she has really good head strength too!


Adalee Update- Sorry we were not able to update sooner- We have been following mom and dad's updates via facebook- Here is what mom most recently posted : "It seemed Adalee was turning a corner and was doing better. But, last night, she started to have more episodes. It might be airway edema; she could also be having seizures. Most trisomy kids have seizures and are on meds. She will also be getting a blood transfusion. We are just waiting and doing more testing over the next few days. They moved us to another pod; it's never good when the nurses want you closer :(" - Please continue to ask God to watch over baby Adalee and help the doctors to use their knowledge to give her the treatment she needs. We can't imagine how tough this must be on their whole family to be back in the hospital again for so long. Thank you God for taking care of Adalee thus far.


Another prayer request---this whole experience has made us much more cogniscent of the trials that other parents/families/individuals are going through, and when we know of someone struggling these days we really feel the need to share and ask for prayers because we know how powerful prayer can be- We feel like everyone was so gracious and spread the word and prayers for Madeline how can we not do the same?

Anyways, a friend of ours found out in the last few months that their Brother in Law has Leukemia. He is working so hard to stay here.. here is the most recent post from our friend *used with permission* : "As most of you already know...my brother-in-law, Brad, is fighting ALL. It is a very aggresive form of leukemia. He has been fighting to obtain remission since January with no success. He currently has been accepted into a gene therapy study in NYC and is spending the next month at the Cleveland Clinic for intense chemotherapy to get the leukemia under control to get him to NYC. He can use as much prayers and positive words and thoughts that anyone is willing to give. Even if you don't know him...you know me...and he is my family...and we LOVE him! So if anyone would like to send a positive thought his way please, please don't hesitate.

Brad Hulvey c/o cleveland clinic foundation 9500 Euclid Ave.mail code G111-1"


His family is also planning a few fundraisers to assist in raising funds to cover the costs of living expenses etc while he and his family are in NYC. I will post details on those as I know more. Please pray for a miracle for him so this dad can stay here with his wife and family.


Thank you all for doing what you do best!