Sunday, June 28, 2009

Starting Solids

Alyssa started eating solids consistently last week. She's up to eating 2tbsp's a day. We are slowly working up the levels. Remember that aspiration and choking is a big concern.. so baby steps. As you can see dining etiquette is something we will work on next. right now we just want to get the food in and keep it in!

Wednesday, June 10, 2009

Meet Our Friends...

This beautiful girl is MaCari and she has Trisomy 18!We "met" MaCari and her mom Carri a few months ago by e-mail. We hope to meet them in person some day soon. They actually live close to us...well a few hours away, in another state but hey in the T18 world that is close.

MaCari and her mom Carri

MaCari is 15 months old today! Isn't that something to celebrate? What a wonderful example of how compatible with life Trisomy 18 truly can be...

She looks like a daddy's girl too!
It's a daily thought almost.. the phrase "incompatible with life" can doctors or medical professionals in an non-exacting science make such a concrete determination when there are so many examples of just how compatible a Trisomy baby can be to this world. Yes I understand the statistics, however with a change in thinking...a change in practice...there will be a change in the statistics.

Tuesday, June 9, 2009

Playing Along

Here's Alyssa sitting in her chair. Patti, her PT brought it to us on Monday. Alyssa's talking in this shot, I was wondering what she was saying. Is it I want a toy?

Nooo, something about her new glasses. You can't tell but these are her new glasses. They aren't bent up like the old ones, so they must feel a little different for her. We just picked them up this morning. Yep that's it! So now I get it, little miss wants to take them off. Do you think she'll do it, knowing I'm watching!
She's doing it, how bold!

OH!, now she's worried about paparazzi???Caught in the act, but the mission is complete! Well how do you like that?

Alyssa is becoming more aware of her glasses. A few months ago, she'd wear them all day without incident. Now we get an hour or so and then she yanks them off. We'll put them on again after a break and the pattern repeats. She tracks better and does more with them on; so we'll play along with her until she tolerates them better.

Here's another shot of us hanging out... I can't believe the SOFT conference is in about a month! As a matter of fact so is Alyssa's birthday. I'm disappointed that we can't make it this year, to the conference. It would have been a great way to memorialize her first year. I also was looking forward to meeting some of our online friends and learning more about the advances in T18 research/treatment. I hope that we can make it next year; with Alyssa in tow! It would be neat to catch up with everyone in person. The mom's I've met on-line.. Marta, Connie and more have been such a help to me in learning the ropes. Cathy, Brenda,...maybe I'll do a make a wish for the girls to get together. A spa day for us gals, and a Bar-b-Q for the men?!? ;-) Wouldn't that be awesome!! Prayers and hugs to you and the glad Annabel is feeling better and that Brianna's "scare" was only that! Kelly and Carri your girls are inspiring too! Carri can I post some pictures of MaCari? She too cute, not too. Akaiya, Annabel, Alyssa, Brianna, and Macari..the T18 "brat pack"!! ooh I can't forget about May and sweet little Vera! It seems like Alyssa follows Vera's moves closely. Vera has made some incredible milestones in her 15 months..i can only hope it'll be just as good for Alyssa.

Sunday, June 7, 2009

Answering questions...

What kind of surgery did she have done on her eye? Around four months Alyssa's eyes began to cross. The left side being more affected than her right. (This is Alyssa at 6 months old and before surgery)
A lot of T18 babies have strabismus or other eye issues. After an eye examination it was determined that Alyssa is farsighted too. We began patching her eye and she was prescribed eye glasses to correct the problem. We didn't give a lot of time (about a month) to determine if these non-surgical methods would work. For us this was sufficient time to learn that she would benefit from surgery. Since we knew that she was going to have surgery for the G-tube, her eye doctor was more than willing to come on board and fix her eye at the same time. The results have been wonderful, her left eye is corrected. She is still favoring her right eye though so we continue to obstruct her vision in that eye for brief periods in order to re-train her left eye.

(Alyssa 10 months old)

Alyssa had a skin biopsy, why? Shortly after her birth Alyssa via blood draws was diagnosed with Trisomy 18 (Edward's Syndrome). Once again taking advantage of Alyssa's April 2009 surgery, we decided to get a second skin biopsy to confirm a diagnosis of full Trisomy 18. Her genetic doctor stated:
Alyssa is a remarkable baby...who is showing amazing gains in her milestones that are most unexpected in a child with her condition...
Alyssa with Dr. Schneider - June 2009

We wondered if her progress was because she has mosaic T18 and not full T18. This question was more temporal for us then anything else. The answer wasn't going to change how we feel about treating Alyssa's T18. Since her birth we've taken a moderate approach for lack of a better explanation. We know that every life is valuable and that every child has a spirit that needs to be nurtured. In all that we do on Alyssa's behalf, prayers for Godly wisdom and the aforementioned thoughts guide our way. Last week we learned that she is in deed full Trisomy 18. It's nice to know. I've also come to think that her survival along with the survival of many other babies/kids with full T18 is an encouragement. Not only to other parents who receive this diagnosis while their child is in utero but for doctors as well..T18 awareness~knowing these babies do survive and live happy lives~will help to change the view of the condition.

How does your husband deal with having a daughter with special needs?
Ed is a good dad. He is an involved dad. He has been filled with common grace and a heart for kids. I am thankful that he is an experienced dad (that we are experienced parents) that has skills to draw from for this situation. He loves Alyssa just like anyone of our 3 other kids. It was shock to him to hear her diagnosis; sadness, fear, and anxiety came along with that too. Yet as she gained strength, so did he and the hope of her surviving longer than anticipated encouraged him. Ed is a laid back kind of guy; doesn't talk in depth about his feelings. He mostly lets his actions speak for him. He has said though that it is difficult to be sad when he has Alyssa here smiling at him. He's been a good example for all our kids but especially for our boys in demonstrating unconditional fatherly love. He could have easily chosen to withdrawal into his "man cave", but he is an involved dad with his "special needs" daughter. I know he sees Alyssa as his baby girl and doesn't let the label of a diagnosis negatively impact his love for her. I pray for him everyday, that when it is time for them to part on this earth..that saving grace will allow them to be together again in glory.

Alyssa and her dad after her surgery in April.

How does get Alyssa get so many therapies?
Pennsylvania is one of those states that leads in providing appropriate assistance for families with disabilities. Our county in particular is great at meeting the needs of families. When Alyssa was three months old we signed up for early intervention services. Many therapies, resources are attached with early intervention. If you are not familiar with Early Intervention (E.I.) I suggest you look it up in your state. Locally you can call your Department of Public Welfare or Department of Mental Health/ Mental Retardation office for assistance.

Our provider of services is through the Cerebral Palsy Association (CPA). Alyssa has physical therapy (PT) and Occupational Therapy (OT) each once a week. She also receives specialized instruction (SI), to learn how to play' twice a month. The therapist(s) she has are wonderful, very attentive to her needs and development of skill. Alyssa working with her OT Kris on tucked chin positioning for sitting

What can milestones has Alyssa reached? Alyssa developed a social smile about the same time a typical baby would; which was around 2 or 3 months old. She coo's, not always the vowels sounds sometimes it's still guttural. She recognizes our family and frequent visitors. She responds accordingly to each of us and she notices strangers too. She'll cry or seem timid when being held by someone new. If left alone in a room, she'll "call" us; she is content not being held but definitely likes an audience. She began rolling to one side around 8 months and now rolls both ways (her left side roll is stronger). With positioning she can roll over onto her belly and back. When laying on her tummy she can hold her head up well for a good 5 minutes. She still likes to tip her head back when sitting,which cuts down her ability to sit independently. She can sit up for brief bits 1-2 minutes before her positioning goes haywire. she is batting, grabbing and shaking toys and has been doing so consistently for about 2 months. She likes to pull hair and necklaces too!
I just keep in mind that she can do what other babies do, she just has to be taught and it may take her a little longer. I try not to place limits on what she can do or what we will expose her to..she takes the lead and we will follow.

Alyssa playing with her favorite toy.

This spinning toy lights up and she loves it!

The Mic-Key Button

Alyssa had her permanent G-tube the Mic-Key button placed on May 12th. The first picture is the Mic-Key button closed and the second is with the attachment for feeding. It is pleasantly surprising how much easier the button is for us and how much Alyssa seems to like being without her NG tube. Utilizing the button for feeds is quick and effortless, cleaning is a breeze, and no one can tell it's there unless we tell them! It's nice to have Alyssa's face free of the duoderm and tape. I didn't like the idea of permanently placing "hardware" in our daughter. When first broaching the idea of the button, that is how I saw invasion!

Now it's more like an acceptable version of body piercing. Not so sure if we'll ever get her ears pierced so here's an untraditonal piercing, just for her and its functional too!! (F.Y.I. I will be very unhappy if any of our other kids should choose to have untraditional body piercing~ yes this from a mom with tattoo's~ I know of what I speak.)

A few days prior to having the button placed we made changes to Alyssa's feedings. Her dietitian increased her feeds to 105cc's every three hours during the day and kept the 306cc's overnight. Instead of using Polycose to supplement my breast milk,the use of Carnation GoodStart was recommended. The goal is to eventually have daytime feeds only and allow Alyssa to truly rest at night. Yes, we'd like to eliminate overnight pumping. Can we do it? Yes we can! (ode to Bob)So when few days after having the tube placed, Alyssa seemed a little out of sorts we weren't too concerned. She spit up a bit the 1st day after having the button. Then a little more the next day, by Friday she was projectile vomiting and pooping up a storm. Literally everytime she moved she'd poop and everytime she ate, she vomited. She didn't have a temperature so I followed up with her nutiritonist. All of our children had been soley breastfed, and other than the Polycose additive; Alyssa only had breastmilk. So I was thinking that the formula may have been affecting her in some way. Wrong!

It turned out by Friday night she had a temperature and unlike her usual self did not want to be touched. I was up with her all night and Saturday wasn't much better. By early evening she had a temperature of 103 degrees with Tylenol! So after a few phone calls and consults with her doctors, we headed to the ER at CHOP. On a good day this is a 45 minute drive, due to road work and traffic it took almost 2 hours!!

Once at the hospital Alyssa was admitted;they later determined that she had cellulitis. We stayed up all night Saturday as she had testing, bloodwork, x-rays to confirm correct tube placement. Around 2 am it was clear that part of the issue was the tube site as it was red and hot. By this point Alyssa cried/screamed anytime she was touched. She may have caught a bug too which would account for the vomiting/and frequent stooling. In the end after an allergic reaction to one antibiotic, Alyssa was placed on pain meds, tolerable antibiotics and Tylenol. It only took a few hours to see a difference and by Monday mid day our Alyssa's sweet disposition was back. Alyssa was discharged on Tuesday, three days after her arrival.

This was our first ER experience and unplanned hospital stay for Alyssa. Other than birth and her first surgery in April (for the tube, strabismus correction and skin biopsy), Alyssa in her 10 months had not required hospitlization. It was a lip biting experience, seeing her heart rate so high, her temperature so high and her pure discomfort. We are so thankful for God's mercy in that Alyssa pulled through rather quickly and without serious complications. It's been a few weeks now and we haven't had any other problems. We are still glad to have gone the G-tube route.