The Race!

Sorry for the radio silence! Brent and I took off Friday morning to head to the Outer Banks with his twin Brother Joe and his wife Sarah. The reasoning for the trip was so that the boys could run the OBX Marathon. The picture above was as we dropped them off a the start of the race. They looked similar to this at the 10 mile point however at the 20 and the 26.2 they looked a little road worn-- thus I didn't post the AFTER pictures. We had a very restful weekend despite the fact that the men refused to move off the couch as soon as the race was completed and every time we tried to tell them to get their own food/drink/remote they would reply "When was the last time you ran 26 miles?". I speak for my sister in law as well as myself here: We are both very proud of our husbands but see NO NEED to continue with these pursuits in the future! Training ate up a great deal of conversation and time over the past 5 months.... I think 10K's and 1/2 marathons are much more reasonable and don't make you walk funny for a week.

All of this was facilitated by Brent's parents who came and took care of Madeleine for the weekend. Personally between you and me I think they were very happy to be rid of Brent and I. While we were gone Madeleine picked up many new skills here is a list:

- So Big. Sarah is a former teacher and she put her skills to good use by teaching Maddie to do so big. Sarah taught it to her in all of about 3 minutes. I don't think the car was unpacked before she had learned it... We may be calling her in to teach other things we have been working on for MONTHS.

- All Done. We have been doing basic sign language with Madeleine for a while now and are starting to see her doing some of the signs. She now knows how to do the signs and what to do when we say them now we need her to do them when it is her preference. For example I would be over joyed if when her tummy was full she signed all done. We are a way off from this but if you asked me two months ago if she would be signing at this point I would say no way. It is not the most graceful all done sign anyone has ever done but if you say it enough times and you watch closely she does do it!

-Cow. Kay says she is doing this sign, I am very skeptical... None the less we are working on farm animal signs. Between you and me I am not sure what cows/pigs/horses/sheep have to do with our every day lives... I think we would be much better off teaching her such functional language as traffic/rain/metro. There is virtually NO livestock in our lives - unless you count what is on our plate and I think it's a little early to key her into that reality.

She is ALMOST crawling. I know I will be the first to admit I have been saying this for months but really folks she is ALMOST crawling. Brent put her down in the middle of the living room floor to make a sandwich last night and in a minute music started playing. She had managed to get her self over to her computer, touch the screen and start the music. How she got there I am not sure. She has some odd ways of being mobile that only people with hyperflexiblity can relate to. She can do perfect splits while laying full chest on the ground. THIS IS NOT GOOD. Thus, we are back to wearing the baby biker shorts so she has to keep her legs in the correct position. Now that winter is here, we can put the lovely biker shorts under her clothes so she can still look super cute while receiving the benefits of the therapy.

We are spending the weekend turning our basement into a preschool. A while back I posted I needed help with organization and soon after Deborah her nurse, Brent and I got together and we decided that the best thing for Madeleine would be to create stations in our basement where she can go from table to table and play with different types of activities. I am combing craigslist for people selling little people tables and so far have had great luck!

Have a great weekend, stay dry and I'll post more pictures as soon as I have a few minutes.

Thanks,
Kirsten

1st Report Card

Folks,
Holly is our speech therapist at the Loyola Clinic. She sent over some progress notes to us that we thought were noteworthy! If you are in the DC area and have a kid with developmental speech delays the Loyola Clinic is the BEST!

Anyways, here are her notes:

* At first Madeleine was resistant to signs and would become stiff when I took her hands to make the signs. Now, she lets me make the signs easily, looks at me when I'm making the signs, and looks at her hands as I am helping her make the signs. This shows that she is starting to understand that the signs are meaningful and convey information. Also, her sign for "more" is coming along incredibly!

* Madeleine also seems to wave "hi" and "bye" with very minimal or no prompting. She waves when she sees herself in the mirror, showing she understands the context in which to use the gesture.

* Madeleine is also improving with choosing objects when given two choices. Today, when I held out two animals and asked her to choose one, she looked at both and reached for one two times. The other times she was able to reach for an object when I gave her more motor stability. I assisted her in holding her arm to help control her movements, and with the additional support she moved her arm toward the direction of the desired object.

* The variety and frequency of Madeleine's vocalizations has also dramatically increased since the start of therapy. I have heard her produce "b, p, d, g/k" and several other sounds like tongue and lip raspberries. This variation is great because some children get caught up in just one or two sounds, wheras Madeleine's utterances are varied. This variety of utterances is a great precursor to speech.

Pretty great huh?

Quick Update

Madeleine got her H1N1 vaccine today! One could easily say I was slightly fixated on it getting done so I must tell you I am over the moon thrilled. I know some people are concerned about getting it but for us it is non-negotiable. Madeleine is as about as high risk a person could be (unless of course she was pregnant too!) for the serious implications of this virus. Anyways, as long as we get thru the next week or so while she builds immunity we should be ok---FEEEEWWWWW. I got my shot yesterday and Brent is going to get one as soon as we can find another dose. I may send him to the pediatricians office on Friday to see if he can sweet talk them into giving him one!


Brent also took her to the GI clinic today where we got the go ahead to start packing the food in her mouth!!! We are shifting to a more complex formula (still very broken down from what healthy babies eat) but a huge step in the right direction for Miss Maddie. We are also condencing even further to make her more hungry during the day. Yougurt & custard are suggested and other suggestions on high calorie things that dont require chewing would be greatly appreciated. No food food yet but we are going much faster than we ever imagined.

That's all.... Great day!

Kirsten, Madeleine & Brent

What a difference a year makes!

First things first: Madeleine is doing very well medically and the fallout from surgery is now a distant memory. We are now back on track with focusing on developmental milestones and keeping her healthy thru the winter.

On to the good stuff: We have had a very fun two weeks. Last weekend (Oct 25th) we took Madeleine to a pumpkin patch. We saw cows, pigs, chickens and a texas long horn. The first place we went you had to get on a hayride with other children (AKA virus carriers) and I decided that a trach and hay weren't a good combo. So we got the feel for a real farm and got out of dodge before we caught anything! We then proceeded to buy our pumpkins from a church parking lot! Virtually no hay there :-) It was a beautiful fall day one we will remember forever.

We had a check-up with surgery on Monday where she was thrilled with Madeleine's progress and assured Brent that the weird bump on her tummy was just a place where she put in a double row of stitches to ensure it stays put. She said by our final follow up it should be gone. She also noted that she was surprised at how much large intestine Madeleine had left. Either it was improperly noted in her chart or it had grown over the year. Regardless this is good news for the future.

On Friday we went to speech (we call it school and it is a big outing where we wear our BEST clothes). She is learning three signs - more, all done and music. She played with a barn and the barnyard animals. She practiced taking them out of the barn (she is good at that) and putting them back (not so hot). I am thrilled to say that after a weekend where I probably said the word more about one thousand times she now does the sign when I say the word. I don't think she has a clue what it means, but that is step two. Now we will have more food, more music, more bath, more toys, more computer, more etc.....

Saturday my Aunt and Uncle Jenny and Willy came to visit and play with Madeleine. We had a great time seeing them and catching up. It was especially cool because they came to visit six months ago and at that point Madeleine still had the NJ tube, vent 100% of the time and the colostomy bag. It was only when we reflected on their last visit that it really set in how far we have come in such a short period of time.

And now for the title of the email: What a difference a year makes! We are probably one of a few families that gets to use the same Halloween costume two years in a row. As you may recall Lauren and Rebecca our PA's from the NICU bought this costume for her last year. They thought it was a ladybug costume but after a good laugh we determined it was a strawberry. She didn't like it very much and the only good picture I got was on my cell phone. Who likes getting shoved from head to toe in polyester, I can't blame her! It made a good picture though...

Probably the question we get most often these days is "How is she eating?" So I'll give a report on that. She is doing great! She swallows more than she spits out and is doing well. We are finding that she eats more when she has been off the feeding pump for a long time. You may be thinking DUH - as were we! It's hard to motivate anyone to eat (except my husband) when they aren't hungry at all. We also noticed that she enjoys eating a lot more when we are sitting at the table doing it as a family. This has been aided by the fact she stays up a little later now days. She almost stays awake until 8pm!

Finally, we need some help. Brent and I had a bit of a 'debate' this weekend about the state of toys in our living room. AKA disarray. I wanted to buy toys and he was furious based on the fact that we have so much stuff and no possible way to organize the stuff we have - why would we want to get MORE? My idea was to put things into different baskets based on activity - aka a music box, sensory box, etc. Do any of you in blog-land have an effective way of organizing toys so that your house doesn't look like a daycare center?
Take care and I look forward to hearing your suggestions!

Kirsten

PS I have attached a video of her talking up a storm. The Picassa site has also been updated with October pictures - lots of cute ones from the pumpkin patch.

Pictures Galore!

Above is one of HUNDREDS of pictures taken by my Uncle Joel on the weekend of Sept. 12 when we were all in State College for the PSU/Syracuse game. I hope you will agree he did an amazing job of capturing our family - even the dogs!

I have sat on these for so long because I wanted to put together frames for our parents - but alas, that has not happened and I feel very guilty that these haven't been shared.

Look at this link for all of the pictures --- I would like to note that probably the best picture of the entire series was taken by Kathy, Joel's girlfriend, as he noted, his lovely assitant!


http://picasaweb.google.com/kfcweeks ( I am sorry I have tried 100 times to hotlink this and I cannot figure it out... Cut and paste this link into your browser and you will see the pictures)


Thank you SOOOOOOOOOOOOOO much Joel - we can't thank you enough!!!!

Pictures as promised

I had to look long and hard for a picture of Miss Madeleine naked without a bag on- probably because I wasnt the largest fan of the stoma or the bag. I'll spare you pictures with the bag on b/c you may be eating lunch while you read this. Anyways, the one on the right is from last summer (Aug 08). The little red thing sticking out is her stoma or intestine. That is what was reconnected two weeks ago. The image on the left was this morning 13 days past surgery. I think it looks pretty good! The piece of plastic on the right hand side is her feeding tube and that will be there for a long time. However you can now see her belly button and hopefully the scar will start to diminish over time the way her heart surgery scar has.

I have some more pictures to post but work calls - so I'll try to work on it tonight.

Thanks,
Kirsten

Update

Madeleine is doing very well and you would hardly know she had major surgery a little over a week ago. Sunday was a bit rough as we did not have the the perscriptions filled from discharge and as a result Mommy changed 15 - 20 diapers Sunday from 8am - 7pm. It was really unbelieveable. Now that the meds are on track we are on a much more normal schedule! She slept a lot over the weekend but yesterday was back to her old antics of barely taking any naps.

She had OT this morning and as Brent and I were walking out she was practicing her tummy moves- I can't believe she is tolerating it already. We have not weighed her since the surgery but she has lost some weight, mostly because she had really no calories for 5 days after surgery. She'll find it I am sure.

Today marks the one year anniversary of the tracheostomy. While difficult to adjust to and life changing in terms of the technology and nursing that it comes with, we credit it for being the one thing we did to turn the tides on her health issues. After the trach it has been all up hill, with a few minor bumps in the road.

We are thrilled that the surgery and hospital are behind us and as long as we can all stay healthy we have a quiet period ahead! I'll still make good on my promise for pictures...