Tuesday, February 24, 2009

A rare thing!

So yeah this is a rare thing. Mommy in a picture, usually I am the one taking the picture but here you go !!! Mommy and Micah man. Don't you love the slobber on my shoulder!

Play time!

Last night my husband and I got to babysit our neice Kirstianna. Joseph loves to play with her mostly because he can boss her around but she just loves Micah-man too. He smiles so big when she talks to him and she likes to hold him!!! (or try to hold him)

Monday, February 23, 2009

I can't believe it!

I have posted previously that we are working on getting a stroller for Micah so we can get out of this house. So I wanted to share how ridiculous all of this is. There is only 1 stroller that Micah can have because all the rest do not lay flat. Now the company that my insurance is dealing with is telling me that the stroller we NEED is too expensive because the company that makes it will not give them an extra discount!!! They are trying to get us to buy a stroller that will NOT work for Micah and they are trying to tell me that the only one that will work doesn't do what I know it does. The employees at this company do not know I have been talking with the Vice President of the stroller company who has helped MANY families of SMA children! So I am supposed to hear from them today to tell me what they have found out over the weekend and make a decision. I also called the VP of the stroller company and asked if she could talk to these people and let them know why this is a MUST!! It seems to me that in some situations money should be left out of the mix and people should be helped regardless of how much profit there is in helping them.

Sunday, February 22, 2009

On the way

On Wednesday we had to take Micah to the neurologist for a follow up. Micah did very well in the car as long as the Bipap was on. It is very hard for him to remain sitting for a long time if he doesn't have the help of the Bipap. I have to sit in the back seat with him because his head flops around too much to sit without help holding in place! Anyways the Dr.'s appointment was a complete joke, our doctor told us that a diagnosis wasn't important and a bunch of other nonsense. Needless to say we won't be seeing him again. Instead we have an appointment to see the neurologist we saw in the hospital. He really was great.

My boys

Every once in awhile Joseph wants to hold his brother. Micah is just in awe of Joseph and everything he does and says is funny. You can't usually get Micah's attention when Joe is in the room because Joe has his full attention.

Sweet Baby

Here is Micah on Valentine's Day I just love his sweet little face.

Micah and Daddy

Somedays I feel like the luckiest woman on the earth, actually that's pretty much all the time. This is one of Micah's pretty darn good days he was sitting up with Daddy watching TV.

Thursday, February 19, 2009

Today was just as good!

So out of nowhere my husband brings me home flowers. But not just any flowers they were some of the most beautiful flowers I've seen, and for no reason. Not my birthday, Valentiens day, not any special occasion just because he was thinking of me!!! I love him.

Tuesday, February 17, 2009


I don't think I have given a very real picture of what happened or how this diagnosis and hospitalization has affected our family. So I had the most perfect pregnancy, no problems, normal amount of discomfort. Micah kicked me in all the same places my 3-year-old Joseph did and We had no reason to think there was anything wrong. My labor and delivery were probably what most women think they want, 3 1/2 hours from beginning to birth. Micah was healthy, pink, and had a great set of lungs. He screamed!! Joseph didn't even cry when he was born so this was different to me. We thought for sure he was going to be the exact opposite of Joseph, loud and wild. A few hours later he was mellow and content, nursed well and slept great. PERFECT!!

The first couple of months babies don't do much except eat and sleep, poop, pee and cry. Micah did all that very well. It wasn't until we took him to his pediatrician at 2 months old to get a check up and shots that he realized something wasn't right. Micah wasn't holding his head up yet and his muscles were very weak. He wasn't as wiggly as most 2 month old. So this began our process, botulism??, myotonia??? Nobody was sure. Until we saw the neurologist. He was very comforting telling us he knew exactly, just by looking at Micah what was wrong. Myopathy, congenital myopathy not botulism. He was sure and at that he thought that Micah would eventually grow out of it. No further testing was need and even if we did further testing it may not give us any answers anyway. His physical development would be way behind but he would walk someday and run and do all the things that kids should be able to do.

So with that diagnosis we began to research and he never quite fit all the symptoms just a few and only in part. Next we began to get involved with physical therapy and occupational therapy with 2 different organizations and every week Micah seemed to be improving. We saw a pulmonologist, cardiologist, neurologist and the pediatrician. Everybody said that everything was great!! So we continued to do what we were doing and I also began to do massage therapy to help stimulate his muscles. The physical therapist and occupational therapist both, for weeks, told me that his breathing was different, not right. More like a teeter totter, paradoxical. I didn't listen to their concern. He also has a rattle in his throat and I asked the Dr. every time we went and it was never a problem always in his throat and never in his lungs. After awhile I began to ignore it. No big deal!! He had a brother that was always sick anyway from the kids at school.

One Friday my husband and I were talking about a wedding we were going to go to the next day. I hadn't had an excuse to dress up in a very long time and was excited and nervous at the same time. I had my hair done and new makeup and i had a new outfit to wear. Micah began to cough( he had always had a weak cough and couldn't clear very well) and cough. Suddenly I panicked because his face turned BLUE!! I tried to make sure he wasn't chocking and then he began to cry! WHEEEW, but his breathing was funny. We decided to take him to the emergency room right now. We dropped Joseph off at my in-laws house and went to the hospital.

They put him on a pulse oximeter and oxygen and he did okay for a while. they took 1 x-ray and noticed his heart and trachea were deviated to the right!!! That is not normal. He had a collapsed lung. The doctor and staff transferred us to the best place we could have gone, Santa Barbara Cottage Hospital. The doctor there pretty much knew what was going on before he even saw us I think. After one whole month in the PICU, machines to help him breathe, monitors constantly alarming, panicking and worrying all day, no sleep for 3 nights, a terminal diagnosis, wondering if I will even be able to hold him again, being told he cannot nurse any more and having a tube feed my baby, he almost died, watching chest compressions and bagging him, and not knowing why, we got to go home. He smiled at all the nurses and most of the doctors and they almost became my family. I knew every one in the PICU. Micah fit every symptom of his new diagnosis, weak mucles more in the legs than arms, not able to lift or hold head up, never reaches physical milestones such as rolling over , crawling, walking, difficulty swallowing, weak cough, sneeze, cry.

Now we are home. Everything is different. Joseph is a wreck because he has been passed around our family for 30 days and Mom was never there to take care of him. Micah has more equipment than I ever though a 6 month old could have. I am responsible for all of it. We have to take care of all of it!!!

Bi pap machine is used most of the time, he can be off 2 times a day for up to 4 hours each time. We usually do 3-4 in the morning and 2-3 in the evening. Or all the time if he is having difficulty. The machine has 2 filters, one cleaned monthly and one weekly. The mask needs to be cleaned every time we take it off, and the humidifier needs to be cleaned and replaced daily.

Suction: when ever it is needed, part of Micah's disease affects his ability to swallow and has to be watched closely because he could aspirate and cause more problems. The tip, tubes and canister need to be rinsed daily and disinfected weekly. The battery needs to be charged every couple of days.

Feeding: Micah had a feeding tube surgically placed in his abdomen and this is how he eats. during the surgery he also had part of his stomach wrapped around his esophagus so he cannot spit up and aspirate. Feedings are at 9am, 12noon, 3pm, and 6pm with a continuous feed throughout the night from 9pm to 7am. before each feed I must flush the tube and this is also how I give his meds am and pm, and after the feed I must flush the tube. Feeding bags are changed daily and rinsed between feeds.

CPT: Chest physiotherapy is done 2 to 4 times daily. There is an electric percussor and I have rubber manual percussor. I also work on positioning with Micah on his belly to loosen up the junk in his lungs and work it out.

Micah has a pulse-oximeter which I usually only use at night of if he falls asleep off his Bi pap.

We also have a nebulizer for breathing treatments, oxygen concentrator, and oxygen. We haven't had to use the oxygen yet, knock on wood. Bath time is getting hard we have no fancy things to help and Micah man is getting big, 23 lbs and 29 .5 inches, hard to lift in and out of a bath tub. He loves bath time he can move his legs a little bit and his arms well.

Micah is now an 8 month old happy baby. We are working on getting a medical grade stroller to accommodate all of his machines so we can do outings, but he laughs and smiles all the time. He talks with coos and grunts and he is learning to make choices with his eye movements. We still do physical therapy once a week to push his range of motion and work on new positions and strengthen what little muscle he has. Right now he does well off the Bi pap for about 3-4 hours but definitely needs the help. He does not lift or turn his head, move his legs or roll over, but he does move his feet and arms. He has lost a lot of strength in his swallow and tongue and lower jaw.

Micah loves to be outside, he loves his brother and running around the house to chase him. Yes we chase brother and play hide and seek with him. Micah laughs so hard. He is getting used to being held again and sitting up a little more often now. It is hard for him. but our life is getting more normal, what ever that is, and enjoyable. It has been very hard to learn to live to enjoy the day at hand and not be upset and wonder when Micah is going to die, but if we focus on here and now life is manageable with lots of prayer. Micah is an amazing child and we are so blessed to have him.

Tuesday, February 10, 2009

Slimey smile!!

Okay so Micah got a new mask and I have to say I love it. He can see so much more and it actually fits him. It leaves no blisters or marks on his little face!!!! I think he likes it too. He has been doing well lately fighting a little junk in his lungs but happy. We have just cut back on his food he has gained too much weight and. The next thing we are working on is the wheelchair stroller that will hold his Bipap, battery, suction, pulseOx and feeding pump with the IV feeding bag if we need it. It also needs to lay completely flat.I am really looking forward to being able to get out and walk with him.
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