Matt & Grace
This is the amazing journey of our two miracles. John Craig was born on November 30, 2005 at 24 weeks and 5 days gestation. He weighed 1 pound 8 ounces and was 12 inches long. John is a true miracle and an inspiration to all that meet him! Hope Amanda, our perfect little girl, is currently recovering from two brain surgeries to remove a 6cm mass from the center of her brain. Hope represents everything good in this world and she too is an inspiration to all.
For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future.
Jeremiah 29.11
Jeremiah 29.11
Sunday, April 29, 2007
Team John California!
Today was an extra special day because my best friend and her family walked in honor of John in California and my brother and sister-n-law walked in Ohio (Aunt Alli was also the MC!) We love you guys and can't thank you enough for supporting us, loving us, and praying for us since we began this journey 17 months ago. You are truly amazing and we will be forever grateful!
Go D-Backs!
We had a wonderful weekend. Saturday we went to the mall to get the little man some shoes.........that actually fit him! You are never going to believe this........our little 1 pound 8 ounce micro preemie wears an XX wide shoe!!! His new name shall be.......Big Foot:) We ended our weekend with a trip to the ballpark for John's 2nd D-back game! He did great.....especially since he only had a 2 minute nap........he wouldn't nap before the game and then he finally fell asleep right when we got to the ball park. We tried to quietly put him into the stroller........didn't work! Anyhow, we had a lot of fun and after the game we headed to Grams and Grandpa's for dinner........we hoped he'd fall asleep on the way to their house but again, no luck. We got home around 6:00pm, gave John a quick bath, and he was sound asleep in about .2 seconds.
Saturday, April 28, 2007
Who needs coffee....
Friday, April 27, 2007
John News!
Thursday morning John and I went to his last Synagis appointment. We were actually glad that he was able to get an April dose because I know there are still a lot of nasty bugs out there. Unfortunately, there was only one nurse working.........usually we get 2 nurses and they stick him at the same time. Anyhow, he did fairly well (better than Mommy of course) considering the nurse was the slowest shot giver (nice word hugh?) in the world! On a brighter note, John and I were jamming out to The Veggie Tales on the way to the hospital and the song, If You're Happy And You Know It, came on............AND, John clapped right along with the song! Call it coincidence but, I say the kid is a genius! Every milestone is a true miracle!!!!!!
John has quite the schedule these days..........
Monday: PT ( 2x a week starting next month)
Tuesday: ST
Thursday: PT
Friday: OT and ST
Wow.....I can't even imagine what it's going to be like when we add soccer and t-ball practice into the mix:) Thank goodness I don't have to work full time.......wait a minute being a Mommy IS full time.....and then some overtime!!!!
So, Wednesdays are our free days...........and we can't wait to set up some play dates!!!!
It's the simple things in life that make John smile!
John has quite the schedule these days..........
Monday: PT ( 2x a week starting next month)
Tuesday: ST
Thursday: PT
Friday: OT and ST
Wow.....I can't even imagine what it's going to be like when we add soccer and t-ball practice into the mix:) Thank goodness I don't have to work full time.......wait a minute being a Mommy IS full time.....and then some overtime!!!!
So, Wednesdays are our free days...........and we can't wait to set up some play dates!!!!
It's the simple things in life that make John smile!
Wednesday, April 25, 2007
Feeding clinic
John and I headed over to PCH bright and early this morning to attend our 3 hour feeding clinic. We met with an OT, ST, GI, Nutritionist, and Pulmonologist. It went really well.
The ST wants us to do another barium swallow study.......remember last time we went John wasn't taking anything by mouth so we weren't able to do it. She feels that he is taking enough water by spoon now for it to work this time. She hopes to get us in, in the next few weeks. She also wants us to be more aggressive with his feeding..........hmmmmm, not quite sure what she wants us to do.......hog tie him and force his mouth open?
The GI wants us to gradually work his Peptamen Jr. calories up to 30 (his old formula + oatmeal = 27 calories.) He is currently at 24 calories and unfortunately he has lost weight for the first time in almost a year:( He weighed in at 21 pounds 9 ounces! We will have another weight check in 2 weeks....so stay tuned!
The Pulmonologist and I just chatted for awhile........he really didn't need to see John however, he is part of the clinic. Anyhow, he said his lungs were perfect, ears looked great (we just finished our antibiotics on Sunday) but his sinuses were a little swollen.........he said it looks like allergies. So, 12 days after we stopped taking one of our meds. (Enulose) we are adding another (Singular.) The never ending saga of a micro preemie:)
And, on another note, the hospital called today to re-schedule his synagis shots.........they canceled last week because they said they weren't going to give an April dose because RSV season was over. They must have changed their mind. Oh well, it just gives the little man some extra protection from all the yucky germs out there.
The ST wants us to do another barium swallow study.......remember last time we went John wasn't taking anything by mouth so we weren't able to do it. She feels that he is taking enough water by spoon now for it to work this time. She hopes to get us in, in the next few weeks. She also wants us to be more aggressive with his feeding..........hmmmmm, not quite sure what she wants us to do.......hog tie him and force his mouth open?
The GI wants us to gradually work his Peptamen Jr. calories up to 30 (his old formula + oatmeal = 27 calories.) He is currently at 24 calories and unfortunately he has lost weight for the first time in almost a year:( He weighed in at 21 pounds 9 ounces! We will have another weight check in 2 weeks....so stay tuned!
The Pulmonologist and I just chatted for awhile........he really didn't need to see John however, he is part of the clinic. Anyhow, he said his lungs were perfect, ears looked great (we just finished our antibiotics on Sunday) but his sinuses were a little swollen.........he said it looks like allergies. So, 12 days after we stopped taking one of our meds. (Enulose) we are adding another (Singular.) The never ending saga of a micro preemie:)
And, on another note, the hospital called today to re-schedule his synagis shots.........they canceled last week because they said they weren't going to give an April dose because RSV season was over. They must have changed their mind. Oh well, it just gives the little man some extra protection from all the yucky germs out there.
Time to invest in some baby gates! John has decided to venture out of the play area.
Sunday, April 22, 2007
WalkAmerica 2007
We had so much fun on Saturday at the walk. I was a little nervous when I woke up and it was pouring rain outside........but hey, a little rain doesn't hurt anyone! We had a few sprinkles at the beginning of the walk but by the time we crossed the finish line the sun was shinning.
Team John was unbelievable..........it brought tears to my eyes to see all of our family and friends out there walking with us, supporting a cause that is so VERY important to us. It was cold, it was wet, it was early...but everyone was there!!! I thank God every night for blessing us with the most supportive and loving family and friends. We'd be lost without them!
John did awesome at the walk.........he slept the entire 4 miles! Just as we crossed the finish line he woke up and was ready to party!!!!
All in all, it was an AMAZING day. Everyone is already pumped up for next years walk.....and we are setting the bar even higher!
Wednesday, April 18, 2007
Grams to the rescue!!!!!
For the past 16 months we have been trying to avoid germs.................however, they have found there way into our home and we are ALL sick. Jamie can home early from the D-backs game Tuesday night (that alone tells you how crummy he was feeling) with the achy/cold flu. So, I loaded him up on medicine and sent him to bed, gave John his antibiotics and Baby-dophilus, and went to bed myself...............only to wake up at 3:00am with the stomach flu (the worst type of illness in the world.) So, I called Grams and 6:30am on Tuesday with an SOS...........Mom what would I do without you? Anyhow, she came over, packed him up (clothes, lotions, medicine, vitamins, feeding extensions, feeding bags, syringes, feeding pump, etc) and took him to her house for the day/night while Jamie and I tried to sleep it off.
As thankful as I was for John to be in a germ free home...............I missed him like crazy. I must have called 10 times or so just to see how he was doing........of course he was doing wonderful and having a great time with Grams, who plays with him non-stop..............Grandparents are the best! So, after disinfecting the entire house today we went to pick him up.........we couldn't get there quick enough.
So, we are all back at home and feeling better..........for the most part. John seems to be feeling good...........minus the molar that just popped through and the other one that is making it's way through.......10 teeth, 20 more to go!
Now, we just need to rest up for the big walk on Saturday. Team John is awesome.........we have met yet another goal and I am tempted to raise it once again..........what do you think? Can we hit $6,000 by Saturday?
Clap, clap,clap.........John loves to clap! As thankful as I was for John to be in a germ free home...............I missed him like crazy. I must have called 10 times or so just to see how he was doing........of course he was doing wonderful and having a great time with Grams, who plays with him non-stop..............Grandparents are the best! So, after disinfecting the entire house today we went to pick him up.........we couldn't get there quick enough.
So, we are all back at home and feeling better..........for the most part. John seems to be feeling good...........minus the molar that just popped through and the other one that is making it's way through.......10 teeth, 20 more to go!
Now, we just need to rest up for the big walk on Saturday. Team John is awesome.........we have met yet another goal and I am tempted to raise it once again..........what do you think? Can we hit $6,000 by Saturday?
My boys!!!!!
Sunday, April 15, 2007
Team John!!!
The BIG walk is less than a week away and we are so pumped up. We picked up the shirts/onesies (all 55 of them) today.......they look GREAT! However, John's shirt is by far the cutest:) I also ordered Mylar balloons to represent the Phoenix Children's Hospital NICU Graduating class of 2006! Tied to John's stroller will be 5 blue star balloons (each with a name written on it) in Honor of:
Our Team John shirts!!!!
A big thank you goes out to our good friends Joe & Shelly for making our Team John shirts. If you ever need any group or individual shirts made............here's the place to go!
- John
- Sammie
- Carter
- Paige
- Cole
And, 3 red heart balloons (also with a name on each) in Memory of:
- Carson
- Carly
- Kaylee
All 8 of these babies were born at Good Sam (between the end of Nov 05 and the beginning of Jan 06)............and all of them were born at only 24 weeks gestation. They are true miracles!
John's shirt:
(Front)
Our Team John shirts!!!!
A big thank you goes out to our good friends Joe & Shelly for making our Team John shirts. If you ever need any group or individual shirts made............here's the place to go!
Saturday, April 14, 2007
First Ear Infection!
Thankfully I took John into the pedi this morning because.............he has his first ear infection. I wasn't even worried about his ears when I took him in..........I was more worried about his lungs because he has a horrible cough. Anyhow, lungs sound GREAT but ears..........not so good:( So, our little man is on antibiotics for the first time..........post NICU!
Thursday, April 12, 2007
So True!!!
You Know You're The Parent of a Preemie When...
1.You use strange initials (C-PAP, CCs, NICU, NG) when discussing your child.
2.You actually remember how many CCs make up an ounce.
3.You count his weight in grams.
4. The skin on your hands is peeling from washing so often!
5.You hesitate when someone asks his age, but you know exactly how much he weighs!
6. The answer to "How old is your baby?" is a story 30 minutes long!
7. When someone asks his birthday, you reply, "Which one?" or "he's not supposed to be born yet."
8. You start to understand some of the things they say on ER!
9. You turn into Kung-Fu Mom when someone tries to touch your baby.
10. You cry at Maternity Ward and get mad at Baby Story.
11. You see a 7lb newborn and say "Wow! He's so BIG!"
12. Your baby is months old before he can even come home.
13. When someone says how tiny your baby is, you argue that he is huge -- and to demonstrate, you whip out pictures of him in NICU.
14. You do a health check on people when they come to visit .
15. You make people wash their hands before going near your child.
16. You want to scream when someone says that she just wants to have this baby now - at week 28, 32, or 34 weeks.
17. You never take your child for granted.
18. You worry about RSV season and it is still weeks away . . .
19. You know what "RSV" stands for.
20. You pick up 2 pounds of ground beef and think that your baby was born smaller than it.
21. You buy "Purell" in bulk.
22. You can stare at your baby for hours when he sleeps
23. NICU nurses are your best friends.
24. You no longer blink when an alarm goes off....
1.You use strange initials (C-PAP, CCs, NICU, NG) when discussing your child.
2.You actually remember how many CCs make up an ounce.
3.You count his weight in grams.
4. The skin on your hands is peeling from washing so often!
5.You hesitate when someone asks his age, but you know exactly how much he weighs!
6. The answer to "How old is your baby?" is a story 30 minutes long!
7. When someone asks his birthday, you reply, "Which one?" or "he's not supposed to be born yet."
8. You start to understand some of the things they say on ER!
9. You turn into Kung-Fu Mom when someone tries to touch your baby.
10. You cry at Maternity Ward and get mad at Baby Story.
11. You see a 7lb newborn and say "Wow! He's so BIG!"
12. Your baby is months old before he can even come home.
13. When someone says how tiny your baby is, you argue that he is huge -- and to demonstrate, you whip out pictures of him in NICU.
14. You do a health check on people when they come to visit .
15. You make people wash their hands before going near your child.
16. You want to scream when someone says that she just wants to have this baby now - at week 28, 32, or 34 weeks.
17. You never take your child for granted.
18. You worry about RSV season and it is still weeks away . . .
19. You know what "RSV" stands for.
20. You pick up 2 pounds of ground beef and think that your baby was born smaller than it.
21. You buy "Purell" in bulk.
22. You can stare at your baby for hours when he sleeps
23. NICU nurses are your best friends.
24. You no longer blink when an alarm goes off....
Wednesday, April 11, 2007
Sick Little Man:(
Our little guy has definitely caught something fierce...........please pray that it is not strep throat! I think it is just a cold but just a cold can hit a preemie pretty hard. Even though John didn't have any lung disease I am feeling a little on edge because whatever he has is in his lungs and he is coughing up a storm (which of course makes him vomit.) Thankfully we can keep him hydrated through his G-tube. So, we may be visiting the pedi tomorrow.....we'll see how tonight goes!
We've got to get him healthy.........the big day (WalkAmerica) is the following weekend. Speaking of WalkAmerica..........Team John is kicking some serious butt. We have now raised $4675 plus $700 (California team.) Thank you to everyone for supporting and donating to MOD! We will be walking in honor of John, Cole & Paige (24 week surviving triplets,) Sammie (24 weeker & John's NICU girlfriend,) and Carter (24 week surviving triplet & John's first friend) and in memory of Kaylee (sister to Cole & Paige,) and Carson & Carly (brother and sister to Carter.)
Here are a few pictures from breakfast this morning..........cough, snot, and yet still smiling! He's the greatest kid in the world!!!
Tuesday, April 10, 2007
Bye Bye Uncle Craig & Aunt Alli
Unfortunately my brother and sister-n-law had to leave today. We had a great time with them (as always).......and hope and pray that they'll make their way back here. I am sure they are feeling the same right about now.........they probably just landed in OHIO.....brrrrrrrrrrr! Anyhow, Aunt Alli was asked to MC (for the 2nd or 3rd year in a row) the WalkAmerica in Cleveland......and of course she'll be sporting a Team John shirt:) She is also going to try and do a little clip (she is the morning anchor........BEST morning show ever) on John in preparation for the big walk.
Well, I think we over did our public appearances because the little guy has come down with a cold. No worries though............he needs to get these little colds in order to build up his immune system. So, if you live in AZ you'll still see us out and about because remember..........RSV season is over!!!! I did however have to cancel the swallow rehab for tomorrow...........there is no point in taking him if he feels crummy.
Well, I think we over did our public appearances because the little guy has come down with a cold. No worries though............he needs to get these little colds in order to build up his immune system. So, if you live in AZ you'll still see us out and about because remember..........RSV season is over!!!! I did however have to cancel the swallow rehab for tomorrow...........there is no point in taking him if he feels crummy.
Monday, April 09, 2007
Happy Easter!
We had a wonderful Easter weekend! John seemed to be the center of attention (can you blame him) at every stop we made:) We left the house at 7:45am...........the first stop was church with my family. John did great........as always! We then headed to Grams & Grandpa's (my parents) for a delicious brunch. After brunch and the egg hunt, John took a nap and then it was off to stop number 2........Grammy and Papa's (Jamie's Moms!) John participated in another egg hunt and enjoyed playing with his new toys from his Easter basket! We visited there for awhile and then packed up yet again and took off to Nana & Grandpa's (Jamie's Dads) for our last visit. At the end of the day all 3 of us were exhausted.............but it was well worth it!
WOW.....I must have been a very good boy (hmmmm, do you even have to be a good boy or does the Easter bunny come automatically?)
Daddy swears John told the Easter bunny he wanted a football:)
Daddy, I see an egg!!!
Mommy, I LOVE Easter!
John doing his fake cough........too funny!
Other John news....
Eyes: We went to the Opthalmologist this morning for our follow up appointment and it looks like John's one eye is slightly crossing in again. So.................another surgery is in the near future. We anticipated another one (or two) so we were not caught off guard by this. We aren't going to do anything as of right now. We'll go back in October (6 months) and see what the plan is.
Eating: This Wednesday I am taking John to a swallow rehab (all morning) at Phoenix Children's Hospital. The group that will be seeing/working with John consists of.......a Speech Therapist, Nutritionist, GI, and Pulmonology. I'll let you know how that goes!
Public Outings: In just this past week John as ventured out to.........Cheesecake Factory, Coldstone, Babystyle, Carters, Old Navy, and Learning is Fun! It is so much fun taking him out..........and, we'll be doing a lot more of it because RSV SEASON IS OFFICIALLY OVER!!!!
Saturday, April 07, 2007
Uncle Craig
Sorry for the lack of posts lately but I do have 2 very good reasons/excuses! First of all, Uncle Craig (my brother) and Aunt Alli are in town so we have been doing a lot of hanging out and eating out.........and having an all around GREAT time!!! The second reason is..............I have strep throat:( Please pray that John is able to stay healthy!
I'll leave you with lots of cute pictures...........to make up for lost time!
John playing with his new (early) Easter toy......thank you Mr. Easter Bunny!
Yes, I am teething! I promise I don't usually drool!
Monday, April 02, 2007
Arizona Republic!
My little man made his first appearance in the Arizona Republic.........check out page 12 of today's paper. I am sure the phones going to be ringing off the hook...........all the little ladies are really gonna want to meet him now:):):) I need to buy that onesie that says, "LOCK UP YOUR DAUGHTERS!"
Anyhow, our GI appointment went well. We are going to transition him to Peptamen Junior..........what a big boy! And, are you ready for the weight check.................22.08 pounds!!!!
3:30pm Update: I am definitely getting more adventurous! John did not want to take a nap (I left him in his crib for almost 2 hours and all he did was play and roll around, getting all tangled up in his feeding extension) so, the 2 of us headed out for a little spring shopping..........Daddy may make me go back to work full time if I keep this up:) Anyhow, John scored big time............he got another pair of swim trunks, 2 pairs of pj's, 2 onesies, and a pair of overalls! Again, I was armed with purrell and wet wipes in case of an emergency:)
I also wanted to mention (in case you didn't get the e-mail) that I am putting the order in for Team John T-shirts (adults & kids) tomorrow. If you are walking with us and want a shirt,(and haven't already told me) e-mail me your size!
And, an update on Team John............we are now at $3525!!! I have upped our goal 3 times now!
Anyhow, our GI appointment went well. We are going to transition him to Peptamen Junior..........what a big boy! And, are you ready for the weight check.................22.08 pounds!!!!
3:30pm Update: I am definitely getting more adventurous! John did not want to take a nap (I left him in his crib for almost 2 hours and all he did was play and roll around, getting all tangled up in his feeding extension) so, the 2 of us headed out for a little spring shopping..........Daddy may make me go back to work full time if I keep this up:) Anyhow, John scored big time............he got another pair of swim trunks, 2 pairs of pj's, 2 onesies, and a pair of overalls! Again, I was armed with purrell and wet wipes in case of an emergency:)
I also wanted to mention (in case you didn't get the e-mail) that I am putting the order in for Team John T-shirts (adults & kids) tomorrow. If you are walking with us and want a shirt,(and haven't already told me) e-mail me your size!
And, an update on Team John............we are now at $3525!!! I have upped our goal 3 times now!
Sunday, April 01, 2007
Take Me Out To The Ball Game!
John was officially released from house arrest yesterday (we are taking it one day at a time.....still not ready for him to be around kids) and enjoyed his first of many Diamondbacks games. Luckily our seats (thanks Steve and Louise) are away from others so the only time I got a little nervous (germs and people touching him) was when we were in the elevator......I was armed with purrell and wet wipes just in case:) John did awesome the entire game and only got a little startled at the end when the D-backs won the game with a grand slam. John played peek-a-boo with Grams a good part of the game and loved when the crowd clapped and cheered.........he would grin from ear to ear as if they were clapping for him. I'd say John had a pretty good first game..........terrific seats, he got to meet Baxter, got an autograph from Chris Snyder (catcher), witnessed a grand slam, and spent the day with Mommy, Daddy, Grams, and Grandpa...........what a perfect day!!!
Go D-backs!
Daddy, a hotdog and beer sure sounds good!
Hit a homer Hairston!
Who is this big furry man?
Grandpa's so funny........he told me to get a picture with John and Wilbur. I was thinking, why would Wilbur (UofA mascot) be at a D-backs game and more importantly, why in the world would I want John's picture taken with him........I am an ASU grad! In Grandpa's defense, they do look alike:)
Daddy, can I be a baseball player when I grow up?
Daddy, a hotdog and beer sure sounds good!
Hit a homer Hairston!
Who is this big furry man?
Grandpa's so funny........he told me to get a picture with John and Wilbur. I was thinking, why would Wilbur (UofA mascot) be at a D-backs game and more importantly, why in the world would I want John's picture taken with him........I am an ASU grad! In Grandpa's defense, they do look alike:)
Daddy, can I be a baseball player when I grow up?
*Uncle Craig, see what you're missing.......just kidding! Can't wait to see you next weekend!
John's therapies went well this week and so did his IFSP. He has met all of his previous goals.......minus eating exclusively by mouth. We decided to make that an ongoing goal! His new goals are as followed:
- Creep (PT said that's the correct term for crawling on all 4's) across the room to a desired toy. His PT also stated that she is certain this will be met in less than a month.........yahoo!
- Pull to stand
- Go from a crawling to sitting position
- Take 5-10 steps with assistance
Please keep these new goals in your prayers for our little man!
Tomorrow we have a GI appointment so check back to see how much the big guy weighs!
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