Saturday, May 31, 2008

Jacob

Precious baby Jacob went home to heaven today. Please pray for his family. They have had amazing faith through all of this, what an inspiration they have been to me, and so many around the world.He beat the odds and lived 138 beautiful days.

http://fahmer.blogspot.com/

Friday, May 30, 2008

Understanding the wall.

I only am going to do this once because I want my blog to be a place of expression for me, a voice for other moms of special children, and a place for moms to come who have received the RTS diagnosis, and need that precious contact of another mom that knows her grief. I don't want to have to explain my posts, they are what they are. They are my thoughts, my feelings, my hurts, my joys, my praises. They are a mom dealing with this unexpected diagnosis of her precious child, a mom who was knocked to the ground with the words Rubinstein- Taybi syndrome, and the possibilities that it may hold. A mom doing the best she can to survive this, to overcome it, and make it a blessing.


After hearing from some people personally, I think there may be some confusion about" The wall."


The wall isn't something we moms build ourselves, it isn't something we put there to isolate ourselves away from others, it is there because our lives are different, different than they used to be, than we planned for. The wall isn't something that needs to be torn down, it cant be torn down, it is the reality of our special children.
Those on the other side maybe don't see the wall, don't understand the wall, but for us with special children, everywhere we go, we are reminded of what is different, how our lives aren't what we planned for, this is the wall, it is a reminder of, a diagnosis, a death, dreams that will never be. The wall isn't built on purpose to keep people out, it was put there when the doctor said the words, "I'm sorry but......." Jessica Pruitt 2008

Thursday, May 29, 2008

The Wall.........




A wall is built when something happens in your life that sets you aside from the typical normal life.


The wall is there, standing tall, reinforced and unforgiving.


The wall is there in a crowd of people when you see someone with a special needs child, and look the other way.


The wall is there when you stop calling all together, because you think you don't know what to say or do.


The wall is there when you say call me if you need anything just to be polite.


As time passes the wall gets taller, and the isolation grows. The people you used to call friends go on with their lives on the other side of that wall, and with the best intentions of still calling you their friend they seem to forget about you behind the wall.


The wall is simply there because you are able to go on, on the familiar side.


The wall is there because saying you will pray for someone isn't enough.


The wall is there because saying you are thinking about someone isn't enough.


The truth is when someone is adjusting to this new life, on this new side of the wall, they need you to do the work of climbing over the wall, you still have the strength of normalcy, those on the other side of the wall don't have what it takes to reach out, and climb, they were forced over the wall one day without warning, without the supplies they need to survive. They need you to climb over, pick them up, and make the effort to let them know that you can journey with them on the other side now too.


Climb over a wall today.---------Jessica Pruitt 2008

Tuesday, May 27, 2008

No sleep, no syndromes.

Besides the fact that his thighs are too big to fit, Alex had a nice time sitting up and playing yesterday.
He loves his fish.

After a long day........
Sleeping update:
For almost three weeks starting on May 7, the day he had the mic-key placed Alex would not sleep all night without crying, some nights there was nothing we could do, so we just had to let him cry. I took him to the doctor for an ear check just to be safe, his ears looked fine. It does seem that his two front teeth are on there way down, so the lack of sleep has probably been a combination of adjusting to the button (reflux has been worse), teething, and maybe some excess gas, not sure about the last one. For the past 3 nights Alex has slept like his old self, even with the singing, naps are good too. I give him Tylenol for naps, and Motrin at night. The doctor said to give it one more week of medicine, and hopefully we will see some teeth. So he has been on Motrin, and Tylenol for quite some time, but the sleep is slowly coming back to normal. Which is good because I don't do syndromes without sleep.

Monday, May 26, 2008

Can't wait to play tag.........

Last night in the car Noah said that he couldn't wait until Alex could run, so he could play tag with his brother. I simply said "that will be fun won't it." While I was thinking, how long will Noah have to wait to play tag with Alex.

We have not told Noah or Joel that Alex has Rubinstein -Taybi Syndrome, or that it may take him longer to do things like walk, talk, and play games like tag, and every so often they say things like...."When Alex's talks, or walks we can do this"

What do I say????

I don't want them to worry about their brother, they had enough worry when he was born, and maybe I like that they think everything is "normal". Maybe this is my problem with wishing things were typical. I like that in their minds everything is the way I hoped it would be a year ago.

I know they will love their brother no matter what, they don't think twice when they see me tube feed him, I don't even think they have noticed his thumbs, if they have they have never pointed out that they look different. They don't ask why Alex always has to go see a doctor. They just love their brother, and syndrome hasn't become a part of their world yet........I guess I like that.

Alex's friend

We have a new RTS friend that you can meet by checking out her blog. Her name is AnnaKate, she is beautiful.
Her mommy emailed me a few months ago after my blog was given to her by one of AnnaKates therapist. It has been wonderful talking with this mom, she has become a friend. Alex has her picture up in his room, so we can see her pretty face everyday.

So check this lovely little lady out by scrolling down on the right side of my blog are links to other RTS sweeties, and enjoy watching her grow!

Thursday, May 22, 2008

welcoming a new sweetie!

I just talked to a new RTS mommy on the phone. Her beautiful son was born in April so this is all very new to her. I cannot explain what it feels like to talk to someone that gets this, that is right next to me on this road even if we are miles apart. It reminded me of how thankful I am for all you mommy's out there that are here for me, for all of us. You have kept me floating in my ocean of fear, and heartbreak. I am overwhelmed with gratitude, and love for all of you.........



Thoughts of a Mom

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.
You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with heir diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed forthe trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world. But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

New pj's.... new food

Here is Alex right before bed last night in his new pj's after his bath, when I put him down in bed he threw everything up. He NEVER threw up before the mic-key button was placed. Have I mentioned that I hate the button?


Alex had spaghetti and meatballs last night, he really enjoyed the taste, but he had some trouble with the texture. I didn't get all the noodle chunks with the magic bullet, I thought everything was pretty small, the biggest chunks were about the size of an "o" on this page, and he gagged on some of his bites. I will keep trying.

Monday, May 19, 2008

Luxury

It is a luxury to only visit your child's doctor for ear infections and well baby checks.
It is a luxury to leave your child with someone at the drop of a hat for an entire evening so you can have time off.
It is a luxury to say you have never sat at your child's bedside, and watched them fight to live.
It is a luxury to come and go as you please.
It is a luxury to not feel like a foreigner in a strange land when you walk into Apple bees.
It is a luxury to not see every waking minute as an opportunity for therapy.
It is a luxury not to have an appointment for one little person 5 days a week.
It is a luxury to blend in.
It is a luxury when your child gets into everything.
It is a luxury not to feel isolated.
It is a luxury when your child talks your ears off.
It is a luxury when you give your child a bottle and walk away.
It is a luxury to only complain about what "things" you wished you had.
It is a luxury to complain about how your kids take up so much of your time, while you are out with friends.
It is a luxury not to constantly worry about what is coming next.
It is a luxury to be able to read this post and complain about something in an hour.
----Jessica Pruitt 2008

Sunday, May 18, 2008

Soccer

This weekend was Noah's soccer tournament. Noah's team won first place...Go Blue! Noah scored 3 goals in the last game, and you guessed it they won 3-0!!!! Noah was so excited, and he got his first trophy. He has been desperately waiting for a trophy.

Alex went to three of the five games. It was a very busy weekend, but now we can check an activity off of our list!





Friday, May 16, 2008

Jacob

Jacob needs our prayers again. His link is to the right of my blog for the details. Pray for his parents, and brothers too.

Wednesday, May 14, 2008

Belated Mothers Day photos








Our plans were to eat lunch outside after church on my new outdoor furniture that I got for mothers day, but it was rainy and cold....so, lunch was inside. I went to church for the first time since Alex was in my tummy. Noah was really happy to see me come in and sit by him with Alex. They were already there for Sunday school small group. During the service a video I recorded sharing my Alex story was shared, with pictures, and video of Alex. Then I did the unthinkable, and sang a song...right after the video was over. The fear of standing in front of everyone kept me from having a complete melt down.
I will share the video by this weekend....It takes so long to upload.
If you notice in the pictures Alex's pants aren't buttoned....He is too big. the good news is that his weight gain has slowed down by almost half of the rate that it was going. He has gained half an inch in 3 weeks, and his head had a major growth spurt too. Growth wise he is doing great. Today he is in 18 mo size clothes!



something more

Some Mothers Get Babies With Something More
Written by: Lori Borgman Columnist and Speaker

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.
Mothers lie.
Every mother wants so much more. She wants perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more. Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close. The doctor's words took your breath away. It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.
Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news. It didn't seem possible. That didn't run in your family. Could this really be happening in your lifetime.
There's no such thing as a perfect body. Everybody will bear something at some time or another. maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery. Mothers of children with disabilities live the limitations with them.
Frankly, I don't know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.
I wonder how you endure the clich├ęs and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me? I've got what it takes."
You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of the draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a woman I pass at church and my sister-in-law. You're a wonder.

Tuesday, May 13, 2008

Please pray for Jacob!

This is from his blog.....He is such a strong baby boy......

"Hi. It's Karen. Jacob has headed in a new direction. He spiked a fever of 102.1 (which is high for him since his temp is usually about 96 or 97). His respiratory rate and heart rate increased which gave him less frequent apnea spells but we fear him tiring out....he was breathing with lots of effort. We wiped him down with a wash cloth (meds are not an option and he should not be submerged to avoid chilling him) and this dropped his temp to 98.6 which is great. Pray he maintains that. He is now resting comfortably, his heart rate is normal for him and his apnea spells are still happening but he is alert to snap himself out of it. His belly is distended which leads me to believe his higher calorie formula could be giving him tummy trouble. He is currently on plain breastmilk again and his next feed we will give him one dose of pedialyte and then back to breastmilk to avoid bloating like last weeks episode. So, that is where we are at. THANK YOU for all your prayers and support. Please pray for wisdom and guidance and a strong, fighting baby boy."

Monday, May 12, 2008

I hate feeding tubes all together.

I'm having a hard time getting my thoughts in order to post...I should post about mothers day, and show you all the pictures of my wonderful boys, and I will.
I shared my story on mothers day of Alex at our church, and our journey this far, it went well, and many were blessed by it.
So many people have thanked me, and told me how strong I am, and how faithful I am. The truth is, I don't feel strong, and faith......well, that's another post. I have been having so many good moments, but the bad seem to be worse when they come. It doesn't help that Alex hasn't been sleeping consistently like he normally does, no more singing himself to sleep, we are back to crying, and patting. We had five nights in a row of crying every hour all night long, and forget about a good nap. He has also begun to gag, and reflux more... and throw up a few times, which he has never done. I hate the mic-key button.....I hate feeding tubes all together. I just want to give him a bottle, and burp him, why does that have to be too much to ask for?

I will post mothers day pictures tomorrow...right now I am just going to feel sorry for myself and go to bed.

Friday, May 9, 2008

Raspberries


I finally got Alex talking and blowing bubbles...I couldn't get close to his face because when he sees the camera, he gets real still and quiet, so it isn't the best shot, but you can hear him talking about how much he loves his rain forest bouncy seat.......These are the sounds he makes when he is happy, or getting mad. He loves to blow bubbles or "raspberries"

Be sure and pause the music at the bottom of the blog so you can hear him!

Wednesday, May 7, 2008

I hate Change .......(sigh)

Happy 8 months Alex!!!
So happy this morning, lots of cooing, babbling, and smiles...........still happy as we walk into the hospital....smiling...saying our favorite thing "B...eeeeewb" Laying on his bed in his room, all smiles playing with his fish, so trusting that mommy wont let anyone hurt him.........Then the doctor comes in, and says he doesn't want to use the versed.....ok I think, we will get to go home sooner......Alex leaves, and comes back screaming at the top of his lungs, we got him to calm down after about 15 minutes. He is very sore, and mommy does not like change, sure this is coming from the same girl that wished he still had a tube in his nose....I know who says that???I like routine, I thrive on routine, schedules, love it! Now more adapting to do, I'm sure I will get over it, I don't want him to have a tube in his nose anymore!

All went well, he got happier as the day has gone on. He sleeps on his tummy so we will see how the night goes with that......Before you scroll down beware that there is blood, and if you are queasy you may not want to look, but then you would miss the picture of Noah and Alex tonight before bed.

The doctor said it is normal for there to be blood because the peg tube that he pulled out was bigger than the hole he pulled it out of......My poor baby.

Everyone has said how I will like the Mic-key better, but so far no such luck, I have to wash the connecting tube after each feeding, none of that with the peg, and it doesn't vent nearly as well as the peg did, I got tons of air out with the peg, and next to none with the mic-key.......Any suggestions on better venting fellow mic-key users?













Tuesday, May 6, 2008

tubes, tubes, and more tubes.....




Tomorrow we head to St.Louis so Alex can get his mic-key button put in. We started out with the NG tube, which went into his nose, and into his stomach, he didn't care for that very much, especially when I had to change it (every two weeks). I had to stick the tube into his nose, and work it past the back of his nasal passages into his throat, and down his stomach, when he cried the back of his nasal passages or his throat would shut so you would have to wait for him to take a breath and hurry past that point. Once the tube was in and taped to his cheek I would check the placement of the tube by pushing air through the tube and listening for the sound in his stomach with a stethoscope, if I heard the little whoosh of air, I knew the tube was in place.
When we did his first swallow study, and learned that he would not be able to take liquids by mouth due to aspiration the NG tube was how he got all of his nutrients, before we just put whatever he did not finish in his bottle into the tube, once I came to terms with the idea that he wouldn't be taking a bottle for quite some time, we got the g-tube or peg put in in January, now that the hole in his side and stoma have matured, they will put in the mic-key button.
Now we have the peg, which is a tube that hangs off of his tummy...Tomorrow he gets the button which means no more tube hanging off of him, no more pulling at it, and I think it means we can go swimming!
Without the feeding tube Alex would not be thriving as well as he is. It keeps him hydrated which keeps him pooping, which keeps his kidneys clear, and keeps him peeing. He wouldn't be all the 23 pounds that he is, and I am so thankful for the tube. But....I do wish so much to give him a bottle or better yet to nurse him. I nursed both my older boys, and there is something so special about it, even the bottle has some intimate qualities to it, but the tube.....not so much. He does take a pacifier so he gets the sucking satisfaction when I feed him, and that's as good as it gets. I am thankful though, without the tube life would not be so good.
I will post a picture tomorrow of the button and of our day, at our good old home at Cardinal Glennon.
Just to be clear, for those that do not know, the scar on his tummy in the first picture is not from the tube, he had a malrotation of the intestines corrected when he was 3 1/2 weeks old.......

Monday, May 5, 2008

Safe Haven




Oh my goodness the safe haven of home....... When I am at home, I can do this RTS thing. In fact I rarely think about RTS......I can handle anything, this is easy! He is my guy, it may seem strange to say, but at home there is no RTS, just my Alex, perfect in every way..........at home.
When I go out, and see those other people, living my dream, I am heart broken. In fact I was happy when the doctor told me to keep Alex inside this winter, I didn't want to see everyone else and their babies. I get teary eyed when I see other babies Alex's age....Its like the whole world is putting up flashing signs remember RTS, RTS, RTS!!! Does the world look at him with those flashy signs, or do they see what I see......Beautiful perfection!!!


Sunday, May 4, 2008

Visitors........










Alex had his first little visitor friend over this week, her daddy and I went to school together from third grade until we graduated high school. Alex wasn't sure about the sweet baby squeals, but it was nice for his mommy to have a friend over. He also came to see us in the NICU, thanks Doug!

Noah is in the church spring musical this weekend, we went to see the dress rehearsal last night, and it was really good!! It is called The Pirates of the I don't Caribbean, it is about Christians who dont care enough to serve others, and dont see themselves as a gift to God.

It was my first time in the sanctuary since I was pregnant with Alex.......

Friday, May 2, 2008

SPRING!!!!!!


We have gone outside every chance we have this week because it has been so nice. However, Alex hates the sunlight, I think it will be a problem this summer. I will have to carry a big umbrella everywhere we go!
Don't worry Noah will be in more pictures this summer when he is here for all the fun. Joel goes to school on Mon, Wed, and Fri and for only three hours. Noah is gone all day everyday, and on Mon nights he has baseball, Tuesday night Joel has soccer, Wed night is soccer practice for Noah then church, and Thursday night Noah has swim lessons, so things are busy and he misses out on picture time.