Saturday, February 5, 2011

Happy New Year!

Alyssa wearing her new big girl glasses

Okay a late new year greeting, but it is still the dawn of a new year! I can't believe that it's been about 4 months since last checking in, although I do have a few good excuses ( I think). Today the older kids are out of the house and the youngers are sleeping which has provided that golden opportunity and then I read my e-mail and got an extra push of motivation and here it is:

Anonymous has left a new comment on your post "A pregnant mom whose baby has Trisomy 18 is lookin...": I think it is a horrible and very SELFISH decision to put a helpless child through all the pain and suffering with a disorder like trisomy (of any kind). Losing a child is painful, but prolonging agony is even worse. Shame on you all.....

Before I give an update on Alyssa I want to comment to "Anonymous",: There is a bitterness and hint of anger in your message that I find inappropriate. One of the reasons I blog about my Alyssa's condition is to dispel many of the shortsighted and incorrect documented medical journals etc. regarding Trisomy 18. Also I hope to edify the medical community about what it is like to live with/care for a child with T18. Ultimately though I want to encourage other parents/families on this journey or about to embark that there is hope and much to be thankful for when a precious child (in utero or in the world) has T18.

Alyssa leads a regular life similar to my NON T18 kids. Occasionally Alyssa will have an experience unlike my other kids, such as a surgery. This is an experience she shares with many kids managing special needs (like Cancer, SMA, Ehlors Danlos)and it is a small part of her life. The bigger part is filled with smiles, laughter, friends and love. Alyssa is a happy kid. As for me, a T18 mom, I'll quote Horatius Bonar "I praise the God of grace; I trust his truth and might..."

Shame is the least emotion that I feel in regards to raising Alyssa. I could provide a list of many other emotions but if you READ this blog and/or view our pictures/ is obvious that love, joy, and gratitude top the list. I prize the privilege of prayer and will pray for you. I will pray that grace and understanding will set up shelter in your heart. That you will be humbled and released from the pain you harbor. It is obvious you are speaking from a world of hurt, my you come to know God's saving grace.

Since I last posted we did welcome a new little one into our family. In October Leah Faith was born. True to the nature of our family we had a little drama surrounding her birth. While I labored and gave birth, her Dad ~ my dear husband~ decided to jump ship! That's right with the exception of the breaking of my water, he missed the entire labor and delivery due to having a heart attack. Providentially he was at the hospital that morning otherwise it may have been a fatal heart attack. Thankfully both he and baby Leah are fine. My husband feels much better now AFTER the heart attack and the placement of some stents; than he did before. Now he has a normally functioning heart. Since October we are making lifestyle changes to promote a heart healthy lifestyle for not only my husband but our entire family. I encourage you all MEN and women to take time and look at your risk factor for cardiovascular disease.
(Leah and her Daddy meeting, shortly after her arrival)

I do have to mention that the hospital did a terrific job managing the entire days event. I can't write down how Topsy turvy the day was nor can I say thank you enough!! We can now put under our belt the title of being the first family to have obstetric and cardiac care simultaneously!! The cap to all of which was that a day after being released from the hospital as a post partum mom, I went back with our newborn infant to pick up my discharged heart patient husband!!(sigh)

We couldn't have moved through October and the following weeks with out the support of our church family, friends and extended family. Again it is difficult to express in written form how wonderful they each were and how they met our needs in a variety of ways. Thank you seems so small, but it is with a deep sense of gratitude and love that we do thank them for their support and help.

(Alyssa standing in her stander)

Alyssa is now 30 months old and weights 22 pounds. She continues to be a delight. In September we picked up her stander and use it routinely. She loves to stand tall! Alyssa is getting use to being a big sister. When we first brought Leah home, Alyssa was quick to check out the screaming bundle. Now she rolls her eyes at Leah, when she cries; as if to say " your still here?". They are discovering each other and tolerant of each other (insert a sly smile here). It's not easy to give up the spot of being the baby. Alyssa has really developed a love for music. So this was a musical Christmas for her. She received various music toys, she loves the maraca's and the bells the best. She is still very vocal , and routinely calls for her "dadda". Occasionally she will say "mUUUmm" or "mumma". Alyssa has an assortment of vowel sounds and baby babbling that she bombards us with on a given day, of course she is most vocal when playing with her big sister or brother(s).

Vomiting had continued to be an issue for Alyssa and in 10 months her weight gain plateaued. About 3 weeks ago,she had surgery to convert her G-tube to a GJ tube. Normally this would not be a surgical procedure however her stoma ( the site of the G- tube) required stretching; so this meant surgery. Alyssa came through with flying colors and has not had any significant issues with vomiting since!! Alyssa eats very little by mouth and now that this vomiting issue seems to be better controlled we can begin again to focus on feeding her orally too. By the way the she put on 2 pounds since the surgery~ wehooo!! She had been 20 lbs for a long time.

Currently Alyssa is well managing a mild case of pneumonia. She has finished up her steroids and working on finishing her antibiotics. We did make a trip to DuPont for this concern, she did not require hospitalization. She was seen in the ER, and after a nebulizer treatment, medication and a chest x-ray was released home. So we have been managing it here for the last week and as I said she is doing fine. This sickness came on the heels of the rest of us having strep. So we have had a sick house in one form or another for 2 weeks. I am looking forward to some spring cleaning and the summer!

(At the beach in August)

So that's been our last few months. Overall Alyssa has been healthy and making strides in her skills. We remain thankful for the time we have together as a family. Each event whether joyful like Leah's birth, concerning like Ed's heart attack or a continual trial such as managing T18 issues; I am gaining a deeper understanding of my value and worth before God. I am forever grateful for my caring friendships and for belonging to biblically sound church as well as our families involvement in a Christian community. By the by to Mr./Mrs/Ms. Anonymous, it is true that losing a child is painful.I trust in the Lord, and His way in determining the length of my child's life. In the mean time I am thankful for his all consuming grace. I have 5 children and am thankful for each, and I do not know when anyone of them may pass. All I can do is my duty (with a glad heart) and be their mom.