Saturday, January 31, 2009
Thursday, January 29, 2009
Thank you for contacting me about the SMA Treatment Acceleration Act (S. 2042). I appreciate having the benefit of your comments on this issue. As you may know, S. 2042 was introduced in the Senate on September 12, 2007. S. 2042 would authorize the Secretary of Health and Human Services to conduct activities to rapidly advance treatments for spinal muscular atrophy, neuromuscular disease, and other pediatric diseases. Though S. 2042 was not enacted prior to the adjournment of the 110th Congress, you may be certain that I will keep your views in mind should the Senate consider relevant legislation during the 111th Congress.
I strongly support the goals of medical research, prevention, and successful treatment. America’s commitment to medical research and development demonstrates our resolve to understand and combat these terrible diseases, discover effective treatments, and improve the health of all Americans.
I appreciate having the opportunity to represent the interests of Texans in the United States Senate. Thank you for taking the time to contact me.
United States Senator
Pretty cool, eh? I'm excited. Yay Democracy! If you are interested in writing to your own representatives, you can find the info regarding the SMA Treatment Acceleration Act and how to contact your reps here: look at the sidebar. It doesn't take long, and it makes a difference!
Also, Dakin fell asleep in a cute position today, and I thought you all might enjoy his picture. Sorry it's so dark!
Wednesday, January 28, 2009
Tuesday, January 27, 2009
Monday, January 26, 2009
Saturday, January 24, 2009
Friday, January 23, 2009
Thursday, January 22, 2009
We got a wagon walk in yesterday since PT had to cancel. Hoping for another today.
Monday, January 19, 2009
We're feeling optimistic at the moment, since we were convinced that we would have to drop the tube again on Friday. He's eating better now than he ever did with that idiot tube down his throat. He does, however, have some sort of infection that resembles thrush, and so we're hoping that it won't affect him too much. Keep your fingers crossed!!!! He was always beautiful, but he is so much more so without that stupid tube!
Friday, January 16, 2009
ALSO, we get to go to breathing treatments every eight hours instead of six! We're also coming off his tummy and diuretic meds, so all in all we're moving up. They even said that we could try a trach collar trial (Dakin completely off the ventilator for a little bit) next time we go to vent clinic! So all in all a great visit. Yay! Mommy needed a good one!
Tuesday, January 13, 2009
We also found a new nurse. She is a good friend of our night nurse, who speaks glowingly of her, so we're feeling pretty good about that. She came out this morning to meet us (Mommy's new stipulation to the company--we must meet and approve them before orienting them) and seemed amenable to all of our rules, so we're giving her a try tomorrow. She's not very experienced on the ventilator, but Mommy's willing to train someone if he/she appears to be neither stupid nor crazy (both of which we've had in our nurses...sigh...). So hopefully she'll work out for us.
Sunday, January 11, 2009
Dakin loves playing his piano! The "eyes" thing I'm trying to get him to do is a little trick of his--when we say eyes he bats his eyelashes (well, blinks really hard, but it's really cute and always makes me laugh). He however refuses to be a performing monkey and so won't do things when I have the camera out.
Here's another cute shot. I'm not sure what's on his face, but we had his feeding tube out for the day so I thought I'd take advantage of it.
Wednesday, January 7, 2009
Dakin had a GI appointment rescheduled on Monday for today. I almost canceled it yesterday since I had a bad feeling about it, and now I know why. Our day nurse got here at 7, 75 minutes before we had to leave for Dallas. We told her we had to go (she hadn't known--we didn't even know until Monday). So she puttered around for a few mintues, drew Dakin's morning meds, and then informed me she wouldn't be going. The conversation went a little like this:
"Personal reasons. I'll let the office talk to you about it."
"Um, if Dakin had been coughing up blood all night and we had had to go to vent clinic, would you not be going?"
"It just is."
"If I cancel this appointment he can't see the GI doc until April."
"I'm really sorry."
"Were you not planning on working all day?"
"No, I was planning on working at home (our house) all day."
It went on like this for a bit, and she ended up saying, "I think it would be best if I left." I'm thinking in my head, "Yeah, better for you. I'm going to start yelling loudly in a minute."
So she left. Daddy had to take the day off work so we could go--Dakin cannot be transported without 2 people. Needless to say, I'm pretty irate and the agency has fired her. What on earth?!?!? That's the whole point of having these nurses here during the day. Anyway. She is evidently going to have to face a peer review and get some sort of nurse slap on the wrist.
Thing #2: When we got to the hospital, I discovered I was MISSING A SHOE. Yeah. One of my shoes was gone. I guess it slipped off when I got in the back seat with Dakin (I ride with him barefoot since there's so much stuff back there with us it's easier). Fortunately, Daddy had a pair of Jordans in the trunk. Too big, but they worked.
Thing #3: We get in the hospital, and they told me the appointment was an hour earlier than they told me it was. I nearly lost it. I think, though, the guy sensed I was about to go nuclear and got me in. The appointment went well--Dr. B is still ok with us not doing the G-tube yet (since Dakin's eating issues are not related to musculature--he's just stubborn.) and said we can come off his tummy meds, thank goodness.
So that was our day. On the bright side, we did have a good time overall. Dakin did great in Physical Therapy today, and it was beautiful outside. I'm feeling optimistic about a wagon ride tomorrow.
Thanks for letting me vent.
Sunday, January 4, 2009
We are praying for all the SMA and SMARD kids in the hospital right now. Get well soon, little fighters!!
Friday, January 2, 2009
Anyhoo, one of Dakin's SMA buddies had a year in review posted on her website, and I thought it was a good idea (hope you don't mind, Kim!). 2008 was, in all honesty, the worst year of our lives, and not just with Dakin's problems. I won't go into the other stuff, though, and stick to the D. Let's see...at the beginning of January Dakin began eating less and less, and started gagging profusely. 1/7 he was taken to the doctor and put on Reglan for "reflux." Reglan didn't help, back to the doc where he was put on Prevacid. Two days before Dakin's crash, he cried all day and when he wasn't crying he was sleeping. Thinking it was his formula upsetting his tummy, I switched him that night and he seemed better the next day. Then came January 24th. We woke up that morning, and Dakin was very lethargic. He wouldn't smile and was retracting in his breathing (which I didn't recognize at the time). I thought the lethargy was due to him not eating enough, so I got in to see the doctor that day. My dear friend Heather drove us there, and when we got there they put Dakin on a pulse oximeter (I had no idea what that was at the time.) The doctor gently wrapped Dakin up and told me we needed to go to the Emergency Room. His nurse drove us there. Dakin was intubated in the ER and we were lifeflighted by helicopter to Medical City Dallas. We were in isolation for the first 72 hours or so, thinking it was RSV or something of that nature. Dakin had the "million dollar workup" with every test they could think of short of an EMG (that came later). All they could find was that his diaphragm was not moving as much as it should. They tried and tried to extubate him, but he just couldn't keep his sats up, so they trached him around the 10th or so of February.
Finally the 16th of February we got to leave and go to Baylor Our Children's House. We spent 7 weeks there, learning to care for Dakin on our own. Time definitely well spent. March came and towards the end Dakin's pulmonologist recommended that we see Dr. Iannaccone, a world-renowned neurologist. We were transferred to Children's Medical Center Dallas and she saw him there. We also had more CT scans and an EMG/Nerve Conduction study. She recommended that we test him for SMARD-1.
Then on April 9th, we were FINALLY released from the hospital! We spent April, May and June getting accustomed to having 24 hour nursing in our home, as well as the rigors of caring for a ventilator dependent child. We also worked hard to help Dakin to eat normally.
In July we got to go to Daddy's family reunion, which was a wonderful experience. In July we also got the test results from England saying there was in fact a mutation on one of his genes, supporting the diagnosis for SMARD. We spent August and September thinking he would not be with us for very long.
October, and NaNa (Mommy's mommy) came. 10/1 we saw Dr. Iannaccone, and she confirmed the diagnosis. Thankfully, she said that he should be with us for a long time unless he gets a respiratory infection. We spent October preparing for his birthday.
At the beginning of November, Dakin woke up with a hole on the side of his neck, which turned out to be an abcess with MRSA staph. Nice. So we were hospitalized, since everyone is afraid of a vent kid...lol...We were out soon, though. All better a few days later. We had Thanksgiving and Dakin got to sit at the table with everyone else.
December passed peacefully with lots of holiday celebration. Dakin's second Christmas was perfect.
Whew. Long read, sorry! We are hoping for a better year in 2009. Hope the same for everyone else!!!