Monday, April 18, 2011

April 2011-Almost Easter

Wynnie doesn't know a camera he hasn't liked!
Dori all smiles after breakfast today
Alex after school today at the neighborhood shops

Ben happy after eating a donut after school at the shops



It's less than a week away from Easter and we are looking forward to spending some downtime together in the house this upcoming weekend. The babies had a follow-up appointment with their cardiologist and the ENT. Thankfully, there is nothing to report! Their hearts are in the same condition they were 7 months ago, so for us that is great news. Same with their ENT, he didn't see anything different than last time with the little he can decipher from their extremely narrow ear canals. (no news is always good news in Dori and Wynnie's case!)


The ISMRD, an internationally focused nonprofit that advocates for families and patients affected Glycoprotein Storage Diseases asked us to write an article about Dorian and Wynn's condition and how we manage the juggle for their upcoming newsletter. The article ended up focusing on the lessons the babies have taught us. Take a read if you'd like, I've copied/pasted it into the body of this entry:
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“How old are your babies?”

“Oh wow, they are so small!”

Those are things we hear a lot around here. I’m the proud mom of four energy filled boys. Ben and Alex, who our 7 year old twins that play every sport under the sun; and Dorian and Wynn, our 2.5 year old twin boys that were born with Mucolipidosis II and have taught us so much in the 2.5 years they have been here.

After parenting two perfectly healthy boys, when my husband Chris and I found out we were expecting another set of twins we were beyond surprised. We thought “will another set of twins stretch our time and patience? Will we be able to provide the same amount of loving time with the older boys with two new babies needing our care and attention?”

We went full steam ahead with this new adventure. The older boys took much pride in helping set up the baby room, putting the old cribs together, and picking out names. They took a lot of pride in knowing that being an older brother came with a lot of responsibilities, and they were excited for the big day of their baby brothers’ birth.

After six weeks in the NICU, the doctors diagnosed the babies with ML2. It was devastating to hear that Dorian and Wynn’s life span would be very limited. That they would only live to maybe 5, maybe 6 years old. How do you tell a parent that their baby comes with an expiration date? Although the news has hit us very hard, we are blessed to have a wonderful team of caring doctors, a supportive family, and an army of loving friends.

I am happy to say that Ben and Alex have taken on the roles of protective big brothers to heart. Alex is always showering Dorian and Wynn with all kinds of love and affection. Ben is the watch dog of the family. If he thinks a nurse or a therapist isn’t doing things right, he’ll be the first to speak up and protect his baby brothers in an instant. It melts our hearts when we watch how much they love their brothers. We have intentionally not told Ben and Alex that the babies have a terminal illness, because we want them to focus on having fun with them today, not worrying about what may/may not happen tomorrow.

Dorian and Wynn are only 2.5 years old, but they teach us important life lessons each and every day. Here is just a few of the things they have taught us already:

1. Don’t take a single day for granted. Even if it seems like the day has shaped up to be a “bad” one, there is always room to find blessings in each day and time to turn it into a “Good Day!” as Dori loves to say.

2. God’s grace and love for us is shown in many ways – a hug from a neighbor, a smile on a baby, a good report from a doctor, a new flower blooming in the garden. We have to keep our hearts open to actually see and appreciate these little gifts because it’s the good feelings that comes with those gifts that will be engraved in our hearts forever.

3. Big dreams and little dreams are equally powerful. Before the babies were born we had big dreams for them. Maybe they’d be life-saving doctors, maybe they’d be star athletes, maybe they would be the first twins to be President and Vice President! Who knows?! But we learned that you don’t throw away your dreams for your child just because they were born with extreme special needs. You learn to alter your dreams to suit them, and you celebrate each and every little milestone along the way.

4. Don’t focus on the negatives. You can’t change what has already happened, but you can always change the attitude you use to overcome what has happened. Whether you realize it or not, we are all surrounded by negativity. Negative reports on the news, negative family members, negative co-workers can all form a haze of negativity around you. What you choose to internalize is your choice. Negativity is like food – the more junk food you eat the more it deteriorates your body. Negativity deteriorates the soul, and in our home we choose to keep negativity at the door.

5. Families are amazingly powerful. Dorian and Wynn have helped us create a beautiful family of friends, doctors, a team of therapists (PT, OT, Speech, Auditory), night nurses, sitters, neighbors, friends and loved ones. Family are the people you choose to let into your life, the people you choose to confide in, the people you would do anything for. Dorian and Wynn have strengthened our family beyond anything I could have ever imagined. We are so blessed.

God did not give us more than we can handle. We feel so fortunate that God chose us to be Dorian and Wynn’s mommy and daddy. Those little stinkers will continue teaching us the power of love, patience, faith and family. I only hope they can help change your perspective too. Many hugs and blessings from our family to yours.

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Saturday, April 2, 2011

No Foolin, it's April Already!

Ben with his masterpiece, "Ben Golden Adventure"
Alex with his masterpiece, "The Amazing Case"
Wynnie enjoying his 1st football game of the season
Proof of Dori's bullying ways!

This was "test" week for the babies. They had their OT, PT and Speech evaluation reviews. They have to do reviews every 6 months to prove to insurance that the babies are progressing enough and needing still therapy enough to justify therapy coverage. Plus, it's important for us as a team (we as parents and the therapists) to reset our goals for what milestones we want them to achieve for the next round of reviews.

For speech, the Dori has proven to be teachers pet! He has the verbal and communication understanding of a 1-1.5 year old. Go Dori! The therapist did note that when he wants to responds but doesn't know what to say, he falls back to his favorite word of "Hi". That's ok, I say "uh" to fill in the silence sometimes so that is fine. :)

Wynnie is catching up now that he more consistently wears his hearing aids. He is trying really hard to physically imitate when people are gesturing and talking around him and his aggressive at trying to get your attention if he thinks your not focusing on him. Although his verbal isn't as advanced as Dori, he is still a man with a message. He ranks around the communication skill of a 6 month old. Better than last time so we're happy.

For occupational therapy (hands and upper body stuff) Dori is around a 9 month old. We are challenging him more with grabbing his own toys and reaching for what he wants. Wynnie is around a 6 month old.

For physical therapy (lower body and sitting), the categories are graded pretty "hard", I asked them if they could score the babies on the curve. NOPE! Dori can sit independently, but it doesn't count because he can only do it for a minute or two and with a boppy around him, so he scored a zero on sitting. But even though the graded them pretty tough, Dori's leg and back stability graded him around a 5-6 month old, and Wynnie was around a 4 month old. We need to get him to have better head control before he can move onto more complicated body functionality. He gets his big nugget from Ben :)

The babies saw their pulmonologist and he was so happy to see how good the babies are and that they are breathing so well and have had a relatively perfect winter (respiratory wise). Yay!!
We are so proud of Ben and Alex. They had a author's reception for the books they wrote. Ben dedicated his book to his family, Alex dedicated his book to his class. Both boys got on stage to say that so we practiced and practiced. They spoke so confidently!!! Ben even crossed his arms like he was rappin it. So cute! Professional speakers of the future??

Alex is a flag grabbin fool at football... he is a BEAST!! Ben is trying to find his groove on the line and as the season progresses we know he'll be back to being a major force on that line. They love their team and so far we are 1-1. Go Bears!

Our hearts are very heavy for lil Ethan from Minnesota. He was another i-cell baby who was hospitalized a few days ago for RSV. He was having a very hard time breathing. His mommy whispered in his ear that he could go and within the hour he passed away in his parents arms this morning. The news hit me like a truck... our prayers and love are with his parents and extended family. I'm so sad to know that people have to go through this, I hope they have a good support system to help them through the days ahead. In the meantime, we'll keep spoiling our babies rotten, and taking them everywhere we can so they can enjoy everything life has to offer.

Check out this video... it's Ben doing his nightly ball handling drills with Chris. Ben didn't know I was recording him from my laptop in my office. This little kid is so determined, his gumption always inspires me!


video