Wednesday, October 28
Yesterday, Hannah and I spent the day at Children's getting some of her painful tummy issues diagnosed. She is usually a healthy 15 year old, but lately things just weren't right. A few of the tests revealed simple things that Hannah could change to help manage her tummy pains. This was good! Nothing drastic. My daughter and I enjoyed great Seattle Chinese food and lots of conversation. She is a typical teenager though and was embarrassed frequently by me. I sure do love her though!
I met with our FRC (family resource coordinator) at the beginning of the week, she is helping our transition from the birth-three program into the school district preschool (she helps us with alot more than that though) for the twins. I asked for the meeting because so much of Tommy's health has changed this month. I also asked to meet because there was a recent court ruling in Washington state from a suit brought by local families to enable a choice of where their children receive special education services like PT, OT, speech, etc and the court ruled that this should be able to also occur in private religious schools. I asked our FRC to explain how that would look for us if we were to choose a private school for the twins which might enable smaller class sizes and more individualized instruction. As usual, she was extremely helpful and I was glad that I shared my honest anxiety over keeping Tommy healthy. Tearful and honest. Our FRC shared that the preschool will have a medical assistant there in the room just for Tommy and another boy, the ENTIRE preschool time. Nebulizers, inhalers, and bolus g-tube feeds will happen at preschool! With Tommy and Liam in the class, there will be approximately nine kiddos with one teacher, 2 assistants, the medical assistant plus a sign language interpreter. We decided to postpone their attendance until January to make sure every detail is worked out before they go. But we meet in the classroom on November 10 to get more of a feel for the setting. And then start the IEP. This is very reassuring for the twins safe transition to preschool. That is good!
The bad news is Tommy's sleep study was evaluated to a priority for pulmonary dept at Children's. The results are between moderate and severe sleep apnea. An average for kids to hesitate breathing during sleep is 1.5 times per hour. Tommy's average was 42. His airway just keeps collapsing. It's not his adenoids or tonsils, they are normal sized. So we go back early next week to get fitted for a cpap machine. I cannot even imagine Tommy allowing a cpap machine on. But then I cannot even imagine what might happen if we don't.
With Tommy's current health situation his PCP is submitting a request to our health insurances to cover Synargis injections for Tommy this winter. Immunology here in Bham and Pulmonology both wrote separate letters of endorsment for the immunizations agains RSV. This is one of the bugs that has placed Tommy in the hospital both winters with pneumonia. Even though he doesn't meet the age requirements for Synargis vaccinations, he may qualify due to his lack of immunity. Fingers crossed for health insurance to cover those few thousands of dollars in request.
My mental state is just plain ugly lately. Even with a strong faith, daily devotions, exercise and eating good foods, I'm going crazy (slowly but surely). I desperately need a break. My mom is coming up in November to stay a night and I think that will help. Colin and I will get out for a movie and dinner. If anyone reading this who cares for kids with special healthcare needs wants to share ways to stay sane..... please, bring it on! I'm a worrywart by nature and a crybaby. Not good personality traits lately.
Sunday, October 25
Friday, October 23
Oh how we want you to visit again!
Surprisingly, they didn't have a crib for Tommy. Nope. Colin was surprised to learn you bed with your babe for a sleep study. Our little folks always sleep really well when with us, so we aren't exactly sure this test will be accurate.
Thursday, October 22
Tuesday, October 20
From Grandma Sue (my mommy's mom):
Thinking of the many things to say regarding the great priviledge it is to be Grandma to this special little boy I will try to tell you a few of them. Before Tommy came into our lives, I never gave much thought to what the life is of a child with Ds. With the arrival of Tommy and Liam into our family, what a world of learning and understanding was bestowed upon us. To watch Tommy grow and teach us all so much is just the greatest wonder. He is so full of love and the desire to please. The other children in our family all regard Tommy as one of the bunch, which is the way it should be. If the world would all be as caring and as giving as these children and others with Ds are, what a beautiful place it would be. I cherish the days I get to spend with him and his brother. His begining to go to school this winter is a real wonder to me. Having the independence to further learn and develop at his age is more than some people accomplish. I have learned an enormous amount in the last 2 1/2 years from Tommy and look forward to the many years ahead of us. These past few years have given me a greater appreciation of the title "Grandma". I have the greatest appreciation of his entire family which includes his mother, father, sister and two brothers. Tommy has the greatest family and was wisely placed with them for a reason greater than we can understand. I love them all dearly and am so proud and honored to be one of his Grandmas!
Sunday, October 18
Daddy and my brother Liam spent the weekend with friends at the snowmobile show. They had lots of fun. So that left me and mommy, Hannah and Nate out to stir up some fun. And fun we stirred!
Aunt Debbie and Uncle Rob were kind and offered to babysit me on Saturday night so mom could have fun with a bunch of kids to the Scare Fair at the fairgrounds. Aunt Debbie did my night feeding and antibiotics in my gtube like a champ! I got to play with my cousins Madison and Owen and sleep at their house for half the night while mom had fun at the haunted house. I really had a great time! Mom said something about she had the ability to walk upright and not look like a neanderthal like she does when I'm on her hip. She missed me lots though!
Here is my newest tactile area. Bird seed. And shovels and a sand sorter. My OT suggested shoveling things might help with my interest in holding a spoon while I eat. So mommy set up a bird seed shoveling area. Thinking about the spoon though.... let's face it, I like to really enjoy my food. It goes everywhere. Spoons are for sissys. Maybe after I enjoy shoveling bird seed, using a spoon will be fun!
Friday, October 16
While we waited we met an 11 year old boy from eastern washington that has the same skin, eye, hair color as Tommy. They could have been brothers! His mom and I had a good conversation about large age gaps in kids, mine is 12 years between teens and toddlers but that supermom had 17 years and she was loving every moment with her cute 11 year old.
Pulmonary spent about an hour taking Tommy's 'complex' medical history and current issues into consideration.
First, we talked about sleep. He tosses and turns during the night and at nap, abnormally ALOT. But lately he has added awakenings which are terrifying screaming, gasping and he is sweaty by the time I get to the nursery. They recommended a sleep study. It may be that his airway is collapsing at night, which would explain his movement also in that he is trying to get a better position to breath. If this is the diagnosis after the sleep study, he might end up with a nasal canulla of oxygen to help keep things flowing. Apparently Ds gives you a little bit floppier airway which combined with relaxing sleep isn't a good combo for Tommy. We are scheduling the sleep study with their Bellevue clinic.
Next we talked about Polysaccaride Antibody Deficiency Syndrome and their view is pretty serious with keeping pulmicort twice a day nebulizer permanently. Every day of the year now. Which will keep his lung airways a tad bit more open so if 'stuff' gets down there it has more wiggle room to get back out. Technical terms. With pulmicort we need to be sure to wash his face and inside of his mouth after each breathing treatment as it causes sores..... spa treatment for Tommy! And they agreed antibiotics for eight months straight might be the best solution to keep him health.
I totally forgot to talk to them about cardiology's interest in cathaterization to check lung pressures. But I'm really wanting to postpone that diagnosis until another 'event' of pneumonia happens. Cathaterizaiton has risks and right now it isn't terribly important to us.
I must say, I'm sick and tired of Whale parking 6th floor. For the last two and a half years I have been parking there for various appointments and it just hit me yesterday, I need a break from that place! Tommy and I enjoyed a crispy creme doughnut treat on the drive home and it helped my mood:) Our first ever appt with the lung folks was great.
Thursday, October 15
Is the microphone still on? Okay... our next guest speaker is my aunt Debbie. She has known me a real long time as she describes. I love her every ounce as much as she loves on me! Smooches aunt Debbie. Written by Debbie:
All four of my children absolutely adore Tommy and beg to see him on a regular basis. I didn't really realize the impact Tommy had on them until Maddy my youngest started pre-K this year and has a little boy in her class with Ds (N). She absolutely is drawn to Noah and talks to him, helps him, loves him every day. I know this is directly attributed to her interactions with Tommy - he is such a good little teacher and he doesn't even know it!! We all LOVE to do the BUDDY WALK every fall and last year we got to go to the DSO Calendar release - let me tell you what an AWESOME feeling it is to be in a room where you are a minority and you're surrounded by people with Ds!!!! We are all so very fortunate to have Tommy in our lives and I can't wait to give him a big squeeze and kiss next time I see him!! Here's a great poem and an excerpt from Erma Bombeck that I love.
The Creed of Babies with Down Syndrome
Author unknown - submitted by Hope Colen
My face might be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As god in the heavens
Looks down from above
To him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do as you do
But at my own pace.
God Chooses a Mom for a Disabled Child
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen ? Somehow, I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew."
"Forrester, Marjorie; daughter; patron saint, Cecelia."
"Rudledge, Carrie; twins; patron saint... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God ? She's so happy."
"Exactly," smiles God.
"Could I give a handicapped child a mother who does not know laughter ? That would be cruel."
"But has she patience ?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness ? Is that a virtue ?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it ! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint ?" asks the angel, his pen poised in midair.
God smiles. " A mirror will suffice."
Wednesday, October 14
Tap, tap, tap, is this thing on? Mom wanted to share the blogging responsibility with all of our family during October Down syndrome awareness. So, here is my aunt Tami sharing what it's like to know me. Trust me, I smooch on her just as much as she smooches on me!
Sitting here thinking about what to write about Tommy, I remember so many good times with him that it puts a smile on my face. I remember Tommy sitting on the trampoline while Andrew and Liam bounce around….Tommy smiling and clapping all the while. I remember watching Tommy shove food in his mouth as fast as he can, but carefully picking out green beans (from a bean salad) and gingerly setting them on the side. I remember Tommy waking up from his nap, his face lighting up when he saw his brother. For all of you who personally know Tommy, I don’t need to tell you how amazing he is and how his smile melts anyone’s heart.
How has Tommy changed my life? Tommy has given me an awareness I didn’t have before. For me, Down Syndrome was "Corky on Life Goes On". I didn’t know about the challenging medical conditions that are often associated with an extra chromosome. I didn’t know that for many years (and still some to this day) people with that extra chromosome were (are) often institutionalized. The love and happiness displayed by people with DS…so often described by people…..I didn’t feel….until now.
Tommy is an incredible little man with such courage and strength to take on things that you and I cannot even imagine….all with a smile on his face (most of the time). I am so blessed that Tommy is a member of our family.
Looking through the eyes of my (almost) 4 year old son….he doesn’t see Tommy as different. He doesn’t know about the medical conditions. He just knows that Tommy ALWAYS wants to play with what he is playing with. He just knows that Tommy likes to eat cake just like he does. That’s what we all should do……see similarities in people instead of differences.
This poem reminds me of how Tommy has touched my life (and that of my family)
My life will never be the same again
by Cheryl Magnussenwho dedicates this to her daughters Allie & Angel
God made a living miracle
with his very own paintbrush.
As each stroke of His hand
touched upon the canvas
He created a child;
one that He loved so very dearly,
one that He knew would change the hearts
of everyone who took the time to know her,
a child who would show this world
countless unknown miracles,
…a child with special needs.
God must love me so very much
as He trusted in me
to become the mother
of this sweet angel child.
In doing so
He gave me a new life.
One that slows the clocks of time,
teaches me to pause and smell the dandelions,
shows me there is beauty in a goat
and has me catching snakes to revel in their colors;
a life that grants me lessons in respect,
true courage, humanity and advocacy.
God rescued me through this child
and ever so thankfully…..
my life will never be the same again.
Tuesday, October 13
Monday, October 12
This year we also wanted to pray for an orphan. Without foster care in many of the eastern european countries and russia; these orphans still live in cribs for most of their life. We were assigned this cutie, who we will follow and pray that a family comes forward to add this cute girl! I'll make a button soon to add to Tommy's page for everyone to see her cute face. I asked for a child to be assigned to our prayers that didn't have Ds because so much of our life is just that :) Join us in saying a prayer for Millie's health and development while she waits to find her forever mom and dad. Here is more on her from Reece's Rainbow:
Girl, October 8, 2004
Millie will be 5 years old in October. She's developmentally delayed but has made significant progress in the past few months. She's now talking, walking AND running without any problems or assistance, knows her body parts and has "come out of her shell" and is now quite social! Her social worker describes her as "a very sweet little girl who would thrive in a family." Her social worker has approached our facilitator about finding a family for this little angel and has ensured that all of the paper work is completed so that she's free and clear for international adoption if a family is found for Millie.
From her medical records: She has perinatal hypoxia at birth, intracranial hemorrhage first degree. Convulsions neonatal, ASD second degree with Atrial Septal Aneurism. Her motor development is up to her age. She is very skillful. Speech is delayed, she has several words with meaning, but doesn't make a sentence with them. She is very sweet girl, she has emotional reactions. She is eating independently, not toilet trained yet, likes to be with her peers. She sleeps without any disorders. She is under regular check ups from her cardiologist and neurologist, and doesn't have any problems. Millie is smiling often, makes contact by eyes, very interested in toys. She is taking them, transfer from hand to hand, manipulating with them. She likes to play with other children in a group, likes children's songs. She understands simple orders and instructions regarding everyday activities and play activities. She likes to see herself in the mirror. She adores contacts and is motivated to work according to her abilities. She knows how to take off her shoes, clothes. She is imitating simple movements, understands simple verbal orders and is doing them. Spontaneous verbal expression is at the level of "babbling. This sweet girl will make a joy to the family who decides to adopt her.
Sunday, October 11
Saturday, October 10
I'm packing up four boys (nate, his friend k, liam and tommy) and taking them for a car ride to visit. We will also spend time with grandpa Bill while we are down in Snohomish. Grandma Sue is in Minnesota for the week visiting family so we thought grandpa needed an hour or two of high decibel level play.
We hope everyone has fun today. Heard a lot of friends were going to pumpkin patches... good luck finding the perfect one and bundle up it looks blustery.
Friday, October 9
He is 'moderately' compromised. Which means our family will focus on how to keep Tommy home and safe from germs that cause infection to him. Canceling therapy sessions was also discussed by the doctor. And no more sunday school. Of course we can look at the diagnosis and the entire past two years of illness makes sense.
We were told about a spectrum of medical therapies. From placing a central line and administering immunoglobulin every 3 to 4 days. To rotating antibiotics for 6 months straight. To the least invasive therapy which we chose, antibiotics at the slightest sniffle, drowsy look, red cheeks... you get the picture. Catch it at the earliest sign of infection. Which I have a lot of anxiety about because this all is going to boil down to my ability to see the infection coming on.
Lots of prayers are needed for our family over the coming few weeks as we make decisions for Tommy's health. The Immunologist kept repeating that Tommy is the most complicated kid with Ds he has ever seen. Colin and I were pretty upset and of course I don't hide my emotions well. If anyone is out there with experience with Ds and immune disorders I would love to talk to you!
Tommy can take this challenge. And we will be sure to continue getting the best care for him in the world. He is smiling at me as I type and we will be sure to post more pictures soon.
Thursday, October 8
Wednesday, October 7
Tuesday, October 6
When Tommy was born with Hirschsprung's disease (short segment) and Ds, plus he had a feeding tube early on, we knew the childcare options would be very narrow for us. But we found a GREAT place. Promise.
"At Promise, our philosophy is to use creative ideas to meet the needs of the child in a distinctively Christian context and atomosphere". Their goals include:
"To let the children know they are a promise and a possibility and that they all have potential. To let the children know God loves them and thinks they are special. To show all the children they are loved and that it is good to love others. To help children develop a positive self image. To help children establish self discipline by developing a responsible behavior pattern. To promote good and positive thought of the world and situations."
Today we scheduled Occupational therapy and Speech therapy to happen at Promise. Usually those therapist come to our home but due to schedules today it worked better to happen at Promise. And while I was there I had the opportunity again to marvel at their teachers and all the love in the place that my twins think of as school!
Lots of books.
Friends, and lots of them.
Large play areas.
Lots of love.
They have given Tommy breathing treatments, used his gtube twice a day for milk feedings, given him about as many antibiotics as I have given him, reminded me when he had gone 8 hrs without pooping, wiped away my tears on many occasions and helped us raise two sweet toddler boys... one who happens to have Ds. They have given Tommy an environment of typically developing peers and it has meant alot for his development.
Monday, October 5
There are three types; Trisomy 21, Mosaicism, and Translocation. The most common of the three types of Down syndrome is often referred to as Trisomy 21. Most of the people who have Ds, or about 95% have Trisomy 21. This type of Ds occurs because of an error in cell division. The error happens either before or at the time of conception. What happens is that a pair of the 21st chromosomes in either the egg or the sperm do not separate properly. This extra chromosome is then found in every cell in the body causing the characteristics of Ds. There would be 47 chromosomes throughout all cells.
Mosaicism occurs in about 1-2% of all people with Ds. In this type of Ds the error in separation of the 21st chromosome occurs in one of the first few cell divisions after fertilization. This causes the fetus to have some cells with 46 chromosomes and some with 47. The cells with 47 chromosomes have one extra 21st chromosome. Because of the fact that not all cells contain the extra chromosome 21 the range of physical problems varies depending on the ratio of cells with 46 chromosomes to those with 47 chromosomes.
The last type of Ds is called translocation. It occurs in approximately 3-4% of babies born with Ds. In this type of Down syndrome a part of chromosome number 21 breaks off and attaches itself to another chromosome. Often this is chromosome number 14. This causes all cells in the body to have the extra piece of the 21st chromosome. When a child is born with this type of Ds it could mean that one of the parents is carrying chromosomal material that is unusually arranged.
The test used to determine which type of Ds is present in an individual is called karyotyping. For your information, our Tommy has the run of the mill and most popular form of Down syndrome, Trisomy 21. More to follow on another day this week will be how he was tested.
Sunday, October 4
Cousins Madison and Owen liked walking with us!
Grandpa Bill and our family walked the whole course.
And of course Tommy fell asleep :)
Michael and Robert had lots of fun and probably looked the best in our tiger hats.
Sleeping Tommy with Grandma Dorothy and me.
Friday, October 2
On better news, tomorrow is our local Buddy Walk. Registration starts at 11am at Maritime Heritage Park and the walk starts around 11:45. Come walk with us, it will be a great day.
Thursday, October 1
But this is a new year right? So, October is National Down syndrome awareness month. The challenge is to post each day of October... that's 31... for Trisomy-21 which is Down syndrome. Or 31 for 21 for short. Here is Tricia's rally call for all interested in this challenge:
This year I'm going to add guest speakers to my blog during October... my sister Tami...grandma Dorothy.. my sister Debbie... my mom.. maybe even my dad... friends and teachers at Promise.... and my kids Hannah & Nate to talk about what it's like to have Tommy in their life. Not sure what they will say, better stay tuned! You might even see a post this month from Colin, daddy extraordinaire!
All for awareness and inclusion for Down syndrome. 31 for 21. We love a good challenge :)
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- ► 2010 (78)
- The good.... bad.... and ugly
- Wild salmon run restoration
- Play fun
- Sleep baby sleep
- Sleep study
- Guest speaker #3 for 31 for 21
- Weekend stuff
- Guest speaker round two!
- 31 for 21 post on Ds
- Down syndrome awareness month - guest speaker time...
- More buddy walk pictures
- An orphan waiting for her family to find her
- Car ride!
- 31 for 21 School choices
- 31 for 21 post #6
- 31 for 21
- Buddy Walk - Team Tommy's Tigers (part 2)
- Buddy Walk - Team Tommy's Tigers (part 1)
- Tamiflu antiviral day two
- October is national Down syndrome awareness month
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