Snow Angel!!!

Last night we got several inches of snow!! (OK, for you folks in Minnesota, maybe not several inches, but more like 2!!! So really not much to you!!) But for us here in Tennessee that is a BIG DEAL!!! Anyway, Mary really liked the snow! She went out with mommy when the big flakes were coming down and she squealed with delight!!! Here are a few pictures of Mary making Snow Angels. Supposedly there are some pictures of Kate when she was a little girl, that look a lot like this, if I can get my hands on them, I will post them here for all to enjoy!!!




Looks like fun, eh?

Fun, Fun, Fun

Hi everyone!! I know it's been a while since we've updated the blog - we've been very busy with learning Mary's new feedings, putting our house on the market, planning for Mary's upcoming birthday and getting ready for Ryan's change of command. After next week things should settle down a bit!

Mary had a very fun day yesterday playing with her dear friend Emma. They shared toys, laughed, played with Sam and watched a movie together!

Emma was very concerned with Mary's hair and wanted it to look just right for any pictures!

She's a stylist at heart!!

We will be posting more next week as we have a very busy week with lots of excitement. We hope everyone is doing well and please continue to pray for all the children in the hospital and who are not feeling well - we hope everyone gets better soon!!

Mary's First Haircut!!

So if you've been logging on to Mary's blog in the past few weeks, you've probably noticed that here hair has been getting a tad bit unruly!
Here are some excellent examples of Mary's wild hair!
Here she is with all of her Valentine's day cards! Look at those sideburns!!!!








And here is a cute picture of her in her "Daddy Loves Me" shirt. Notice the uneven bangs?

















And look at this one!!!! Woah, someone is in need of a makeover!!!













Here is a BEFORE picture of Mary getting ready for her haircut!
















Here is a picture of her getting her haircut, she wasn't too happy!












And here is an AFTER picture: She looks MUCH cuter, eh?

Mary is Home!!!!

Great News . . . Mary got to come home from the hospital on Sunday afternoon!!
She was SO excited she smiled the WHOLE ride home from the hospital. Then later that night, Sam and Copper came home from visiting Katie, Emma, and Eloise. Mary was SO excited to see her dog Sam, she giggled with delight!! Mary got a bunch of valentines from her friends. Here is a picture of her with all of the valentines she received. She had fun opening all of the valentines with Mommy and Daddy.
Mom and Dad are trying to adjust to Mary's new feeding schedule. It seems like all we do now is feed her. But we are glad the Mary got her G-tube and made it through the surgery OK. Thanks again to all of you who have been praying for her.
The latest news is Ryan's unit is planning a huge SMA fundraiser in Mary's honor!! It is going to be a 5K/10K run/walk and a 25 and 50 mile bike race. We are still working out the date and most of the details, but it will probably be in April. We will post more details as soon as they are known!

Possibly going home tomorrow!

Ok, we don't want to jinx anything, but the doctors told us today that Mary should go home tomorrow sometime. She has been feeling great and is now back to full feeds through her new G-tube. She still has a little bit of crud in her lungs, but we are working very hard to get it all cleared out. Mary's grandmother, Martha just arrived here from Michigan so when she wakes up from her nap, she will be excited to see her. That is all we know right now. Just wanted to send a quick update, because I know lots of people are wondering how she is doing.

Mary Feels Better!!!

We are SO happy to report that Mary feels much better today!!! We did her chest percussion and cough treatments every 3 hours all through the night last night and it really helped!! She actually came off of oxygen at 1:00 am this morning and has been off ever since. This morning when she woke up we actually took her off the BiPap for over an hour and she maintained her O2 Saturation between 97-100%!!!! Yeah Mary!!!

Mary also got a very special gift from a special friend of hers, Stella!! Her mom is Sarah and they have been such a big help to Kate and I during this whole process. Having gone though a lot of the stuff Mary is going through right now, it is great to be able to call them at any time and ask questions. Thank you guys SO much. Here is a picture of Mary with the Bear and Balloon that Stella and Sarah sent.

In the other picture you can see that Mary is feeling much MUCH better. She was smiling at her nurse Robin, who was her nurse in the PCCU the last time we were here in December. You can also see her little Mic-key button, it is the thing in the middle of her tummy with the tube coming out of it. Hope you enjoy the pictures and pray that Mary continues to feel better!

Ryan

P.S. We also just had a visit from Jack, who is Connor's dad. Conner is Mary's friend who is 7 and has SMA Type 1. Jack was in Nashville for business so he stopped by to see Mary and bring us some lunch. That was SO nice of him!

Mary Update & CHALLENGE!!

Hey everybody! We wanted to update you all on Mary, I know lots of people have been checking in to see how she is doing, sorry if we don't get a chance to return calls or e-mails right away. We stay pretty busy doing her treatments and arguing with doctors. . . long story from today. Anyway, Mary is still on her BiPAP with some oxygen full time. We are trying to wean her off of it, but the doctors are reluctant because her right lung is still showing some collapse on the x-ray and she isn't really moving air through it very well. We have stepped up her compression and cough treatments to every 3 hours, which is good. Unfortunately we had to convince the doctors to let us do that as well, but it is really what she needs.
We also had to move her IV from her leg up to her wrist because her leg was getting very swollen from the IV nutrition going in for so long. So we pray that the vein in her wrist will be strong enough.
They started feeding her a little Pedialite through her G-tube today, but decided to wait until tomorrow to do anymore.
Lastly, we weren't able to get a sleep room tonight, so Kate and I will be taking turns napping on the fold out chair in Mary's room. Oh, its going to be another long night.

SO . . . now for the challenge!
Ok, so there is this cool site where you can send an e-card to Mary in the hospital. The really cool part about it is, you send an e-card, but the hospital actually prints it out so we have hang it on her door. So the challenge is . . . we want to COVER Mary's door with them!!!
So her is the link to the site:
http://staging-new.vanderbiltchildrens.com/interior.php?mid=1985

The directions are pretty self-explanatory. But you will need the following information:
Patient’s name: Mary N (fill in the full last name if you know it, most of you do)
Room Number: 5525

Thanks again and keep up the prayers! It is amazing how people all over the world are praying for Mary!

Update - Tuesday Night

Thank you to all of you for reading Mary's blog. We were happy to report this afternoon that her surgery went well and she was doing fine. Late this afternoon we had a bit of a scary moment. Ryan had just left to get us dinner and Mary started desatting. The nurses and rapid response team came in to help her - to be honest it was VERY scary!! They started her on oxygen and moved us right away to the PCCU. An x-ray shows some pretty bad atalectisis of her right lung. The doctors said they can't even hear breathing sounds on her right side. So, we are starting to step up her treatments and see how things go. She is currently stable on 30% oxygen and took a little nap. Ryan and I had to leave because it is shift change - we are anxious to get back in there.

We appreciate all the prayers for Mary and thank you all for continuing them. We will update when we can.

K.

Mary is a Trooper!!!

We are SO happy to say that Mary's surgery went great!!! It took about 2 hours, which is what we expected, but it was nerve racking!! She got a G-tube (feeding tube in her tummy) with a Mic-Key button and a Nissen (prevents reflux from the stomach to the esophagus). She also came out of intubation just fine (that is what we were most worried about). They said she was so strong and brave. She didn't cry very much, if at all. She has 4 little tiny cuts in her tummy which will hopefully heal quickly and then in a few weeks Mary will be back to her normal routine of swimming, going for walks with mommy, and playing with her dog Sam! She is doing very well right now and is watching a Baby Einstien. Thanks to everyone who has been praying for her. Continue to pray that her recovery goes well and that we get to go home soon!

Ryan and Kate

Mary's Special Visitors

Mary had a bit better day today than yesterday! She woke up this morning with a big smile and was feeling a bit better. Then she had an occupational therapy session with her OT, Mary Sue. They worked on some hand exercises and passing things from one hand to the other. Then Mary got a visit from her neighbor Katherine. Mary also got a special package all the way from Texas! It was from her friend Owen and it had some books in it. Mary was very excited to read them and look at all of the pictures! Mary's favorite word of the day today was "mama"! She kept saying it over and over. Lastly Mary had a special visit from some friends of the Carter Family Ministries. They came and sang special songs for Mary and brought mom and dad a home cooked dinner! It was very special, thank you guys very much! Here are some pictures from the visit:Now it sounds like her surgery will be postponed to Tuesday, but there is still a chance it will go on Monday. We should hear more tomorrow night, we will keep you all posted. Please keep up the prayers!
Ryan and Kate

Mary Update

Well, we've been thinking for the last day or so that Mary was getting a little sick. Well tonight, her O2 saturation started to drop a little (only to 96) but we watch it so closely, and she is normally at 98-99, so we figured something was up. On top of that, her heart rate was up and she started running a slight fever. Well, we did another intense cough treatment on her tonight, and we got a lot of crud out of her and we were able to get her sats back up to 99. She got a chest X-ray, but we are still waiting on the results of that. Her flu and RSV test came back negative, so that is good! She is sleeping soundly now on her bi-pap and her numbers look good, not back to her baseline, but good. So we are going to continue to watch her very closely and increase her chest percussions and cough treatments to keep her lungs clear. If she does get sick, this will probably push her surgery back a few days, because we want her to be good and strong before attempting the surgery. Please keep up all of the prayers for her.

Ryan

Surgery on Monday or Tuesday . . .

So, we have been in the hospital since last Tuesday morning and we feel like we have gotten ZERO accomplished, other than getting Ryan sick. . . Mary's surgeon called in sick today, among other things that have gone wrong, so no surgery yet. They can't really tell us when the surgery will be, maybe Monday or Tuesday. So again we don't have any real update. Mary is feeling a little crudy today, with lots of snot in the back of her throat. So we had her swabbed for flu and RSV just to rule them out. But she probably just caught daddy's cold before he even knew he had it.
That is about all, so now we just sit in the hospital and wait. We could go home, but then we would lose any chance of having this surgery anytime soon. It seems a little ridiculous that we can't just schedule the surgery and then come back in the day prior, but I guess you can't do that this time of year with so many sick kids and all the hospital beds full. We hope you all have a great weekend and enjoy the Superbowl!