just a phone pic

doesn't it look like he's praying? so sweet.

matt meets his birth mom- 2 weeks old

tonight, matty matt met his birth mom for the first and only time. (sidenote, this beautiful girl in the picture below is "r", not his birthmom, i will wait to post those until i know its ok to do so). she is 15, so young, really sweet, very pretty, matt looks just like her. i feel a bit speechless after observing the whole thing. matt was so comfortable in her arms, we think he recognized her voice. he looked so handsome to meet her and he was such a good baby. i love how he puts his little hands by his face, but this is also a symptom of his joints freezing, so its hard for him to straighten his little arms.

"r"got a final word on the MRI from a pediatric neurologist and his diagnosis is worse than they even thought. "markedly abnormal brain" i believe are the words they used. he is starting to show more and more signs of his illness, such as little seizures, and not eating very well. "r" and "s" have to feed him an ounce every hour because if they feed him more, he spits it up. he is still as sweet as he can be, even his cries are precious. and all the kids are still head over heels for him. lift up "r" and "s" this week, as they are tired, as any new parents would be. isn't "r" beautiful? she is savoring this little guy and tonight she had the chance to tell his birth mom how much love and care baby matt is getting. oh and please pray for his birthmom, "t". she needs Jesus. and we are praying that through this all, she will come to Him and understand how much He loves her. she is precious and needs our Lord just like we all do.

babysitting baby matt!

liam and i (alyssa) were blessed yesterday to watch matt for a few hours! liam had a ball singing to him and feeding him. he played his kazoo to him and sang him the "whole world in His hands" song..and even told him about his baby sister, sydney, who was already in heaven waiting for him to play...it was a sweet time for liam. and a precious time for me to watch him help take care of his baby matt friend....

joints

just a prayer request... we were all noticing that matt's little arms and legs are so hard to straighten to swaddle, harder than normal. it turns out that his joints are freezing (i cannot remember the name for it), which is a symptom of his hpc (holoprosencephaly). "r" thinks he will start some meds that will help relax him, but it will also change his personality a bit, in that he will be super tired. i guess that's not too different from how any newborn is, but he may have to be on them for the remainder of his life. just pray that he won't be in pain, and that his little muscles will relax.

matt's first picnic etc.

these are from matt's first picnic (he didn't eat much:)) and just random ones of matt and his girls. isn't he getting cuter by the second?

matt's first walk to the park- 1 week old

we intend on having as many walks to the park with matt and the fam as possible. this was the first, so i had the camera of course. "r" has this awesome "sleepy wrap" she wears and matt fits snugly inside. when he's in there, "r" just looks like she's pregnant with a teeny little baby bump. so cute. we think he loves it!

matt's first photo session- 4 days old

i had the honor of taking this little guy's pictures on a beautiful saturday morning. alyssa was there in full force ready to do the "pull and run" as we called it, where she would wait for me to get ready, grab his paci, and RUN. i could only get a couple shots in the interim, cuz this little guy is one of the most alert newborns i've ever met, and didn't really sleep for much of his session at all. "e" was there too, to make sure that matt was happy for his session, she did such a great job and is such a big helper to her mommy with little "mattymatt" as she has nicknamed him.

the story of matt

this is the story of matt.

this is a documentation of his precious life. this is a list of things that God is teaching each one of us through even His smallest creation. this is a blog of photos so that all of us can remember the time we had with him. this is a place where alyssa and i (amy) can invite you to join his short journey.

matt was born eight days ago to a 15 year old girl. our closest and dearest friends have become guardians over matt who would have otherwise gone directly into the custody of the state and likely institutionalized, as he is 'unadoptable'. on his second day of life, doctors discovered that the front part of matt's brain is just fluid, a rare condition known as hydraencephaly. this condition is terminal and matt was given only 6 to 12 months to live. you would never know that this would be his fate when you see him. he is beautiful, perfect, smooth skin, precious lips, eyes that open so widely that you just know he must be taking in everything. he responds to light, to noise, to touch, he cries when he is tired or hungry and is soothed by a pacifier and a good snug. he wiggles his arms, he kicks his legs, he does not enjoy cold wet wipes on his bottom but he loves long walks with the crew. he is everything you would expect a newborn to be. and we are all in love. smitten like a kitten. head over heels. in love.

the sacrifice that our friends are making is incredible but they will never tell you that. not ever. they will tell you that God tells us to care for the widows and orphans and that He has loudly called them to care for matt, the "least of these", a special needs baby born from an unwanted pregnancy. and we will walk alongside them, and as we do we are learning more than we could imagine.

alyssa is much much better with words than i ever dream to be. i can tell you that i am learning and learning from matt, but alyssa can actually write it down as opposed to me just stumbling over my thoughts! so between the two of us, and some occassional posts from "r", we will share his life.

please pray with us. pray for matt. pray that God's will will be done in this little guy's life, whatever His will is. we all know that we would love a miracle, but it truly would be a miracle. so if God is just using this little one to teach us and bring us joy for awhile, then pray for him. pray that he will not be in pain, that God will take him when it is time, and pray for matt's new family, that peace will be given them like never before through this entire process.

we will refrain from using his new family's entire names, so the guardian mom is "r", guardian dad is "s", guardian almost 5 year old sister is "e", and guardian 2 year old brother is "j".

this is the story of matt.