Friday, December 25, 2009

Merry Christmas

Merry Christmas Everyone! Jesus truly is the reason for the season. Amen, Amen! Even though Bradley wasn't here, I'm so thankful we could spend the day with family.

Peanut & Me


DJ, Christine, & Rosie (the dog)


Grandpa & Grandma


Uncle Jon eating Christmas Cookies


GiGi and Peanut


And Peanut found a little foot stool that was great for standing solo! Every moment is a teachable moment, right? ;-)



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Wednesday, December 23, 2009

T21 Traveling Afghan

We were recently blessed with the arrival of the T21 Traveling Afghan. The T21 Traveling Afghan was created by Chandos Field. I consider this to be a hug from so many other families who can relate to our circumstances. Not everyone understands life with Down Syndrome, this afghan gives us families a unique opportunity to share with one another the journeys of DS. It also allows us the opportunity to share the joy and connections established with other people who may not know of all the joys to be found in the life blessed by DS. This afghan is the keeper of many hugs, cuddles, and priceless moments that will be shared throughout all 50 states and even across the globe.

It flew with us all the way from N. Carolina to Ohio. It gave Peanut a comfy place to sleep on the plane and even provided her with some play space during a layover.

It's been with us to visit family and friends and it's even ventured out to go shopping to provide a buffer to all the holiday crowds.

And it's kept little Peanut nice and toasty warm despite the frigid cold Ohio air. Thanks to the T21 afghan she was able to enjoy the Christmas lights at Carlisle Holiday Lights


We'll have the Afghan for Christmas Day so keep your eyes open for new pictures! Thanks CJ for putting all this together. Wonderful idea, wonderful!!

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Monday, December 21, 2009

Eating Recommendations

While traveling Peanut has an even more difficult time eating her food than at home. There are a lot of distractions such as dogs, cats, and grandparents. One recommendation for eating while traveling is to give your baby their "main" food i.e. vegetables, fruits, protein, etc. before offering cookies. Otherwise, cookies will be the only thing eaten. :-)



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Sunday, December 20, 2009

Traveling Recommendations


Peanut and I traveled to Ohio over the weekend via her 2nd trip in an airplane complete with the Traveling T21 Afghan. Her first flight ever was when she was 6 months old and we were heading to Ohio for her final check up at the Cleveland Clinic pediatric cardiology unit. On that flight, she was still so small and pretty unaware that she just sort of slept and ate. This 2nd flight was quite another story. Peanut did okay. She wasn't great, but it certainly could have been worse. I was quick to apologize to the people who sat right next to us for being stuck next to the baby. We were lucky enough to be next to people that were not only understanding but helpful as well by trying to make her smile or just talking to her throughout the flight. They didn't seem to mind the screaming baby and if they did, they did a wonderful job of hiding their discomfort.

The first leg of the trip we sat by the window. When booking my flight, I thought this was a wonderful idea so that she could look out the window and have the wall to lean on. This was a HUGE mistake! The flight had no extra seats so there was no wiggle room. Peanut bumped her head countless times on the wall, the seat in front of her, and even found my face a couple of time (not fun when your kid is wearing a hard helmet). And although she wore her helmet, she was quite unprepared for the feeling of being repeatedly bumping her head and cried each and every single time she'd bump into something. It was so sad. To make matters worse, it was nap time and she just couldn't get comfortable. She did have some good moments though. While taking off, she was smiling as the plane moved faster as faster. I said, "go Peanut go" and she started to pump her arms up and down faster and faster. She loves going fast, just like her Mom and Dad.

The 2nd trip was another story. I wised up and asked our neighbor if he would switch his aisle seat for my window seat. He was happy to make the switch. Now, Peanut had much more wiggle room to express her discomfort. She started off with a couple random yells and as the flight started to take off I was singing too her. With the motion of the plane she leaned into me and simply fell asleep. The moment was priceless and if Bradley had been there I would've made him take a picture. But, I have the memory of the moment. She slept for the majority of the flight snuggled into me, only waking once to be switched to a cradle position. She's getting so long I had to keep adjusting her so she wouldn't get bumped in an aisle. She woke up at the very end of the flight and seemed pleased with the landing. Thanks to the guy sitting next to us who was letting her play peek-a-boo with his hat, she was all smiles.

Some recommendations for parents traveling with their babies...
1. Bring plenty of diapers and wipes. This is from a lesson my SIL learned when her flight was delayed and she actually ran out of diapers and had to re-use a dirty one!
2. Keep snacks handy for take offs and landings. This is keep your baby chewing and hopefully decrease any discomfort. I stashed Peanut's favorite snack (ritz crackers) in the seat pocket in front of me for easy access.
3. Peanut was a lap baby so I brought my car seat just in case there was an extra seat. There wasn't. Find out when checking it in the flight is full. Is it is they may just check your car seat with your luggage to save you time and energy of breaking everything down when boarding.
4. Bring a stroller, even if it's just an umbrella stroller. You never know when you will need an extra hand and that will be the time your baby is extra wiggly. I skipped the stroller the 1st trip & went with a baby carrier and I'm now I firm believer that the stroller is a must.
5. Take an aisle seat. If you have a wiggle worm, their little noggin will thank you for it, even if they miss out on the view.
6. Just roll with it. Don't stress out about everyone around you if you have an unhappy traveler Do the best you can to make sure you and baby are happy, make light of what could be a bad situation and move on. You can't control other people's actions or responses, but you can be there for your baby and make the best of it.

Happy Traveling everyone!


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Thursday, December 17, 2009

Christmas Give-away

There's a Christmas give-away at the Muncks Quiver site. Go check it out and enter to win something before December 20th.

Wednesday, December 16, 2009

An Amazing Day for Peanut

Today started out a little rough. Peanut woke up early and at her usual snack time she signed that she wanted to go to sleep. I put her down and thought that she felt a little warm. So I canceled lunch plans with a friend to stay close to home. No sense taking a sick little peanut out into the Christmas crowds. So Peanut woke up from her nap feeling just fine and hungry.

Today was different from other days though. Today, Peanut fed herself. We started with her usual lunch meat and cheese. After repeatedly spitting it back out, I decided to try a grilled cheese sandwich...something little Peanut has never tried before. Thanks to Bradley's sandwich maker it was a quick and easy meal. Anyway, I made her sandwich, cut the crust off because that's what babies like and by golly, Peanut picked that little sandwich up and started going to town. She ate half a sandwich, 2 peanut butter crackers, and about 10 yogurt puffs. The yogurt puffs are especially notable because they are small and difficult to not only pick up from the plate, but then to make it all the way to her mouth is simply exceptional for her. Peanut was given about 10 opportunities to drink independently, and she did so with minimal assistance about 50& of the time. A huge, amazing day for Peanut. I, literally, cried tears of joy for her today. The last time I felt such a flood of emotions was the day Bradley and I got to take her home from the hospital after her heart surgery. Who knew that eating her lunch would even begin to compare to that day? ;-)

Eating some yogurt melts...


ALL DONE!


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Monday, December 14, 2009

Eczema

We're a military family and getting appointments to see our doctors takes forever, they allow themselves up to 28 days to schedule appointments. So if you are feeling sick, you better hope they don't put you on the 28th day.

I happened to be in town today for a therapy appointment and then decided to swing through post to pick up Peanut's prescription of Miralax. (Shes taking this since she has a hard time with bowel movements due to her low tone). Anyway, I called to make an appointment for Peanut to see about a rash on her face that she's had for a couple of weeks now. It's been on and off again, but these past few days it's gotten significantly worse so I thought it would be best to call and have her doctor check it out. I called at 1 pm and they had an appointment for her at 3:20. I was SO thrilled!

It turns out that Peanut has eczema. The treatment is fairly simple. They gave us a prescription for cortizon that needs to be applied everyday for 1 week. On a schedule of 1 week on, 1 week off. Cortizon should only be used in very small amounts on the face and neck and used intermittently because it can cause skin pigmentation changes. We were also told to quit using Johnson and Johnson products immediately, not because JandJ is a bad product, but it contains alcohol which will dry out the skin even further. They suggested Baby Aveeno or any other mild form of lotion. They also recommended switching to Dove soap which is very mild as well.

The eczema should clear up on its own and I read online that it can be made worse during the colder months. The doctor did say that the area directly around her mouth is worse because her saliva is inflaming the region. One suggestion I sort of have to laugh at is to "try and keep her saliva to a minimum". Any suggestions on accomplishing this little task with a 15 month old teething infant, let me know! ha!

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Sunday, December 13, 2009

Uncle Jon's visit...

So my brother Jon was here this past week. Here are some pictures of his visit...
Just sitting around the house wondering what to do with the day...


Decided to go for a stroll at the Cape Fear River Trail and Clark Nature Center...


Back at the house Peanut wanted to figure out what was on Uncle Jon's face...


The next day we went to the Airborne Museum. Uncle Jon & Peanut sat in a plane together.


I especially like the one with the soldier since we could pretend that Daddy was there...sort of...

It's always so nice to be with family, but always hard to say goodbye. Thanks for coming to visit us Jon!!! I'm so glad you're redeemed. ;-)

Rocking Your Baby

Peanut is taking her sweet time to start crawling. One thing the therapist does with her is get her in a 4 point position, where Peanut is making contact with the floor with both hands and both knees. At this position she rocks her back and forth. I've turned this into a little game with her that she seems to enjoy. I sing rock-a-baby, rock-a-baby, rock-a-baby, rock.

Doing this particular exercise not only gets Peanut in the position to crawl, but it also teaches her about the momentum she needs to get moving. It may be a while before she crawls, but we'll keep doing this little dance until she starts to do it on her own.

Peanut rocking away


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Friday, December 11, 2009

A Mouse


My brother just came down to visit for a couple of days. It was so nice to have the company. We went downtown to a couple museums and then on the 2nd day we went for a hike on the Cape Fear River Trail. That's the 1st time I've been on the trail. It was so nice and relaxing, but chances are I won't go back until Bradley gets home as it's rather isolated. We had the perfect weather for a walk and Jon and I both have long legs so we the same pace with one another. We were able to catch glimpses of the river and even spotted 3 deer.

In addition to his visit and tours of the area, Jon stumbled across a mouse in our garage! My thoughts...GROSS! Last night, I stuck Abby (my cat) in the garage for about 20 minutes hoping she would hunt and kill. That didn't go so well because at the 20 minute mark she started howling at the garage door. She wasn't thrilled about being chilly and waiting out a mouse and being the sucker that I am, I let her in. Unfortunately, Jon was only here for 2 days so I am left alone with Abby, Peanut, and this mouse in the garage. Now, I'm not a huge fan of killing things, but I'm also not fond of mouse droppings and mice getting at the walls of our brand new home. So, I set out 2 traps, but I'm a little concerned about actually catching anything. I'm not looking forward to finding a poor little "Gus-Gus". So, I'm sort of hoping maybe he'll just move along and I won't have to kill him and he won't keep eating anything that looks edible.

Deployments sure do suck...on more levels than one might realize. :-S

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Tuesday, December 8, 2009

Torticollis

Muscles connecting the upper extremity to the ...Image via Wikipedia

One of the contributing factors to Peanut's flat spot is her torticollis. Torticollis is defined as a shortening sternocleidomastoid muscle. For Peanut this essentially means that while she was in the womb she was positioned 1 way for too long and her neck muscles became more comfortable in 1 position over any other. Peanut has a tilt towards the left, so basically the muscle on her right side is longer than the left.

For some children, torticollis can be self-corrected. As the baby gets stronger and more mobile they begin to utilize different muscles and explore their surroundings. For a child with torticollis and low muscle tone, they have decreased mobility and are more likely to explore towards the direction they are looking, which is influenced by the neck muscles. For example, Peanut shows preference for her right side since that's the way her neck muscles would rest. She wasn't strong enough to move her own head so the muscles continued to be lengthened on her right versus left.

Torticollis is fairly simple to treat. I should say simple for the one doing the treatment, but a little more challenging for the child receiving treatment. The muscle on the left side of Peanut's neck is constantly tight it needs to be stretched and massaged daily in order to alleviate the tightness. You can also help torticollis by holding your child facing outward when carrying him or her on the side that needs to be lengthened. While we are riding in the car or playing in the house I try to position Peanut so that she is forced to look towards her left. Peanut has a very obvious right side dominance/preference. When I hand her toys or food, I encourage her to grab them with her left hand, forcing her to look left versus right. Although tummy time is encouraged, we weren't able to do that because of Peanut's surgery. It is possible to use a pillow when they are lying down, but this must be done with caution since some babies may roll over into the pillow and suffocate.

These are a couple simple suggestions to help decrease varying lengths between the muscles on either side of your child's neck. Also remember that when you have a sore neck, it's not always comfortable to work out the knots. Take it slow when do stretches or massages on your child's neck. Follow their cues of what is comfortable and increase the amount of time you spend doing massages based on their needs. Our physical therapist followed Peanut's progress very closely and suggested the above exercises on a continued basis.

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Sunday, December 6, 2009

Hip Helpers

On Dec 21, Peanut will be 15 months old. She has yet to crawl on her knees, but I'm okay with all that. She receives physical therapy 2 times a week, occupational therapy once a week, speech 2 times a day, twice a week, and music therapy once a week. She's a busy little girl no doubt. But, I'm talking about her crawling. One characteristic of Down Syndrome is very low muscle tone. As a result of this low tone, Peanut is hyper-flexible. Rather than pulling up onto her knees to sit, Peanut will swing her legs around to move from her belly to sitting. It's almost as though she's double jointed the way she can swing them around. Some people might think this isn't such a big deal, but transitioning to ones knees is a precursor for crawling, pulling up, standing, and then of course walking. If Peanut continues to take the easy route for sitting, it will take a long time for her to be walking on her own.

One thing that out therapist recommended to help resolve this issue is to wear hip helpers. We tried these once before when Peanut was younger and not quite as mobile, but I didn't care for them because I didn't see much of a difference. Well, now I have seen great strides. Since she started wearing them, Peanut has started to low crawl a lot more and is even trying to pull up on furniture. She wears them pretty much all day every day, even while she sleeps because she also over-extends while she's sleeping. Hip Helpers are these little pants made out of a spandex type material, that I like to call "hot pants". They are sewn slightly in the center and they are very form fitting, hence my nickname for them. Essentially, they are there to teach Peanut the "correct" way to sit. I think they are a WONDERFUL invention and any parent of a child with DS should consider investing in a pair.

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Saturday, December 5, 2009

A to Z Thankful: V-Z

I feel bad it's taking me so long to get through my thankful list. It's been a busy time around here lately. I'm going to lump the rest of my thankfuls together, but everyday I think about something I am thankful for. Here are a few more things I am thankful for...

V-I am thankful for verses: song verses, bible verses, and poem verses. Feeling blue or feeling just fine I can find a verse to fit the moment of the day.

W-I'm quite thankful for walks in the winter.

X-I'm thankful for the XX chromosome without it I wouldn't have my beautiful little my baby girl.

Y-Pan de yucca. This is a bread that I had while living in Ecuador. I was a foreign excahnge student when I was 16 years old. Pan de yucca was a type of bread that was sold at little roadside vendors in town. It was so good and always nice and warm. Absolutely delicious!

There's so much in this life to be thankful for. Whether good moments or bad, we learn something from everything that enters our life, whether we see it in that moment or not. Life, we should be thankful, for every moment that we are given. It's God's gift to experience his wonderful creation. Thank you Lord for all that you have given us and all that you continue to bless my family with.

Z-Based on my experience in Ecuador, I was fortunate enough to learn spanish. Although I'm not fluent like I used to be, I can absolutely understand much more than I can actually speak. But given this, I think it's fair for me to be thankful for zapatos...shoes! ;-)

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