HAPPY NEW YEAR- NEARLY 6 MOS OLD!!

HAPPY HOLIDAYS AND HAPPY NEW YEAR!!

OK I KNOW I WENT A LITTLE EXCESSIVE WITH THE PICTURES BUT I REALIZED I HAVEN'T POSTED SINCE DECEMBER 8TH SO I THOUGHT I SHOULD SHARE WHAT MADELINE HAS BEEN UP TO!

She made christmas ornaments with grandma, went visiting her grandparents on Christmas Eve, read the story of Jesus with Dad,...etc etc etc..

Hope everyone is having a wonderful holiday season!

 How are things over here? Interesting and busy for sure- which explains the lack of updates.

Madeline continues to have nearly three appts a week with her providers between, burning off her granuloma (THREE TIMES NOW), blood draws ,nephrology every two weeks, physical therapy one week, occupational one week , upcoming check ups with gastroenterology, hearing test, vision test, getting sick -seeing Primary Care Physician (PCP)- it's been pretty non stop...

Came to a strange realization today- in one way it was almost easier to trust in God and have faith and endurance while she was in the hospital- Meaning- things were all in his hands there was nothing we could do but trust him to show us where we were going ,trust the dr's, nurses, etc- and now.. the day to day things are becoming the challenges.. wondering how on earth we will keep up with these appts/work/other responsibilities in our life. Everything requires more TIME. We have to prepare her medicines, make her formula special, make sure we find time to get her going on solid foods, the nephrologist now wants us to keep a chart every day of: blood pressure , temperature, every time she ate, how much she at via bottle. how much went in the tube, bowel movements... little things yes. time consuming. yes. mom and dad stressed? YES - Of course we will do whatever is necessary for her- but it can be wearing. Patience stretched thin -always patience for her but for each other, and others? not always but we do our best to pray and as God for endurance through this-hoping there is a light at the end of the tunnel..Both Mom and Dad are a little sick of having to give Madeline shots and make her cry and watching her skin bubble while they put silver nitrate on it to burn off her granuloma, or have the hospital staff poke and prod for 20 minutes to find a vein to draw blood eveyr other week- It's hard to see her in pain what feels like quite often..

For the last two weeks Madeline has been fighting a cold but has kept in good spirits despite of it- however right before Christmas she became a bit sick and hasn't been able to kick it- Things were worst yesterday when both Mom and Madeline were incredibly ill-Madline was constantly vomiting, diarrhea, had a fever and was all congested- After talking with both PCP and Nephrology (she had an appt). The only thing that could/can be done is keep an eye on her and make sure she stays hydrated..Today has been a better day for mom and only slightly better day for Madeline- she was doing good up until about 4 pm and the puking fits ensued- Hoping she feels better soon! Despite everything she is sitting here now playing in her play yard.. Hoping the new year will bring new healing for her!

Sorry for the bit of doom and gloom report but that is the honest truth- Everyone is tired and stressed and worn out but remaining positive that things will get better and staying every confident that God has this figured out and knows how to take care of us- ever thankful for the love that surrounds us.

On the positive side of things Madeline's Nephrology reports have been well! Blood tests show stable results so no major changes in meds/etc. Madeline now weight 14lbs 4oz hooray- she's in the 25-50% for her age which we are told is GREAT for someone in the situation she is in!- Height- she has also grown a little over 1/2 inch since last visit ( I think like 25 or 25 1/2 in) - which also puts her in the 25-50% range. All Good News Bears over in that arena! 

Madeline also finally rolled over! From back to belly while at the dr's office this week ( although she hasn't done it since) and once from belly to back at home ( again hasn't done since)- Hoping she will start doing some more soon- but since she has been sick the last few days we are not pushing it- So proud of her!

Madeline and  Mom also had a chance to catch up with their Midwife and Labor and Delivery nurse- it was a beautiful reunion! So wondeful to be able to see them again and thank them for helping bring Maddie to us! Wonderful people! And if her nurse is reading this -Facebook me! I couldn't find you despite my best efforts!

As usual we would just like to say thanks to all of YOU- it has been an incredible year- This time last year we had not the slightest idea that this is where we would be now! But it is and we accept that- the road has been long and hard and the journey is not over- but yet we are seeking and praying for continued strength and blessings ahead -for us and for all those around us, families in the nicu, friends, family, doctor's, nurses, specialists, stranger. Our life has been made better and more whole because of each and every one of you -We are amazed all the time about how many people seem to connect to Madeline and have something to say about how she has touched them -Well all of you have certainly touched us - THANK YOU!

Happy New Year to All and To all GOODNIGHT!