Friday, January 9, 2009

Speech Therapy

Well today was the big day. Ian's first speech therapy appt with the school. It went well. He actually 'talked' and wasn't too shy. He usually clams up around other people except for Perry & me. After speech, we went to visit the preschool class that he would be in. He is of course the smallest in the room. But it did make me feel better that I followed my gut as he really isn't ready to be in a class with 3,4,5 & 6 year olds.

Ian just learned to walk at the end of October and really well in November so he has only been walking for 3 months. And he doesn't comprehend that he needs to be still for long periods of time. That is what is sooooo frustrating with the school system, they are 'requiring' him to be an average 3 year old. He is not. He is closer to an 18 month level with his walking and talking. Would you expect an 18 month old to sit still for 30 min to an hour at a time when you just learned to walk. Am I expecting too little of him? I don't think so. He still has to go through all the same developmental stages as all other kids his schedule is just a little behind. Do I doubt he can do what they want. No but just not at this time. He needs a litte more catch up time that 's all.

Oh well got to go now so we can play.

Wednesday, January 7, 2009

A history lesson, Birth to December 2008

Just a quick history on what life with us has been like before now.

Ian was born Jan 3 2006 at 27 weeks. He wieghed only 1 lb 8 oz and was 12.5 in long. He was supposed to be an April's Fool baby but surprise the April Fool was on him. I ended up with HELLP syndrome so the only way to help it go away was to deliver Ian via emergency C Section.

Ian came out squawking and fighting and that's the last thing I remember because they gave me some great drugs and the next thing I remember is all 6 grandparents are in my room. I think that was the fastest any of them have ever driven to AL. The rest of the stay was a blur most days as I was too weak to go see him in the NICU. The hardest day was the day I was discharged home without him. That hurt so much that words can't express it.

Ian proceeded to spend the next 4.5 months + at the NICU at Baptist South. That was the wildest ride we have ever been on. Every day was tough on us and him. We had our share of preemie issues: BPD, ROP, PDA, ASD, weight gain, etc but we were blessed that we didn't have to deal with any brain bleeds or NEC or any of the preemie surgeries. Ian was blessed or cursed with his mother's stubborness and temper. Bless those nurses hearts.

Of course, he loves the ladies and had all the nurses there in love with him. While he was there, we got a call in April about some of his bloodwork not leveling out like preemie's should. So they ordered Xrays of his bones. That was a sight seeing 4 grown women trying to hold a little 3 lb kid still. He was not having any of it.

The Xrays showed his long bones were shorter than they should be. The preliminary diagnosis was dwarfism. This threw us for a loop needless to say. No one in our families have dwarfism. So they called in a geneticist ( I think that's right I still can't spell it) to come look at Ian and talk to us. Dr Martinez was very nice and said that OK he has dwarfism, possible achondroplasia or hypochondroplasia, but that will not limit him. He is still our little man and no one has any idea what the future holds for him but that his future is great. So they sent off bloodwork to John Hopkins to get us an answer as to what kind of dwarfism he has.

While we were waiting for the answer, we thought Ian was getting ready to come home and we were so excited. Ian however had other ideas. Apparently he wanted more attention from Dr & nurses. We got the call that his O2 sats were dropping and his CO2 levels were high. They have tried everything they know to do and have consulted with Dr Lozano at Children's in Bham and they want him moved up there. So at the end of May 2006, Ian gets his first ambulance ride.

He is admitted to Children's Hospital. While there we got the answer that he does indeed have achondroplasia. This is complicating his preemie issue of BPD. So the answer was to put in a trach and have him on oxygen. This took me some coming around to but in the end Ian had 'the works' done to him on June 26, the day after my birthday. He had his trach put in, a feeding tube put in, his hernia's repaired and his circumcision done. The poor child was in pain. So once he came off the vent and they were comfortable with his progress and we started our training on how to take care of a trached child, we started pushing for him to come home.

This was the most frustrating time for us as they didn't understand he hadn't been home yet and we wanted him home NOW. The sad part is that for them to now how serious we were we had to ask the question what happens if we sign him out AMA. As soon as that got back to the Dr boy howdy did we get out of there quickly. We roomed in for a week. We finally got to be with Ian 24 hours a day. We had waited almost 7 months for that. That was a stressful week. But on July 28, 2006, 6 days shy of 7 months, we were all finally going home. That was an adventure all in itself with all the equipment that this little kid had.

So for the next year, I became Ian's nurse. That was stressful. I'm already a worrier and add in oxygen, trach, pulse oximeter and all his meds and dr appts, it's no wonder I have a head full of gray hairs. The rest of 2006 and most of 2007 was one big blur of Dr appts and just basically survival instinct with us. It's amazing how you can survive with sleep deprivation and how just 3 hours of good sleep is enough.

As 2007 wore on Ian continued to improve and drop medicines and Dr off of his 'medical staff'. Due to the trach and the achondroplasia and the preemie we have serious developmental delays but Ian stayed healthy and well and was thriving. We joined Little People of America and our local chapter so that we have parents who have been where we are and who can help point us in the right direction. Ian learned to crawl on the back of his head and his feet in an arched position. Looked painful and kept rubbing his hair off his head but it let him get around. Ian also started cruising furniture in June of 2007. He was pulling to a stand and cruising before he could crawl.

In July 2007, Ian had his first achondroplasia surgery, foreman magnum decompression surgery. They go in and enlarge the hole at the base of your skull and remove bone off of C1 or C2(can't remeber which he had) that is pushing into the spinal cord. This surgery is tricky for anyone and we were especially scared. We did have a complication during the surgery where his trach came out and his sats dropped to the 20s -30s. They had to flip him suring the surgery and get his trach back in and then reflip him to sew him up. They stopped the surgery and wanted to do tests next day to make sure that there hadn't been any neurological damage. There wasn't and we had to wait for 4 days for them to finish the surgery. This time no complications. Ian recovered very well. He had a big TV to keep him quiet and a bottle tucked under his arm. So what was supposed to be a 3 day stay turned into an 8 day stay.

As the end of 2007 approached, we got great news that if he passed an overnight oximetry test without oxygen they would take him off of it. So in December of 2007 Ian passed the test and came off his oxygen which was scary since it was winter and it was a security blanket for us in case he got sick. Ian continued to thrive and get better head control and learned to crawl on his hands and knees. As spring of 2008 approached, Ian had his airway scoped and due to the amount of scar tissue from the trach, it was decided that his airway would have to be rebuilt with cartilage when his trach came out.

May 5, 2008 was the big day the day we had waited for. His trach was coming out. He went into the surgery and they rebuilt his trachea with rib cartilage and also took out his tonsils and adenoids. One stop surgery as we like to call it. Ian was kept in the PICU at Children's for a week while he healed under heavy, heavy sedation and on a ventilator. When we first saw him after his surgery he was fighting the morphine shots and finally they gave him a morphine drip. He was taken off of that a few days later as it was causing more problems than fixing.

So one week later on May 12, 2008, they went in and looked at his airway again to see how it was healing and if they could take him off the vent. Everything looked good and he was taken off the vent. When they wheeled him back up to the PICU, he saw his nurse and started bawling. It was the happiest and most heartbreaking moment. I hadn't heard his voice since June 2006. He was definitely letting his presence known. The hardest moment came when I had to leave not long after that as visitation was over and he was screaming on my way out of the unit. So on that Wednesday, we came home again with Ian and this time no equipment.

I got to pack up all his equipment and supplies and send them back or pass along to other trach moms. What a great day that was. Since then Ian has thrived and thrived. While we do have a speech delay, as he is now going through at 2.5 & 3 what 15 months old do, he is talking up a storm and I finally have gotten to hear Mama. Ian started walking in October 2008, and is getting faster and more sure of himself everyday. He also now has glasses to help fix his eyes from turning in. But all in all he is now a healthy happy 3 year old who also just happens to be a dwarf and has many scars due to his surgeries to remind us of what he has gone through in such a short amount of time. But as Daddy says, Chicks love scars. Watch out ladies as Ian is one big ladies man.

2009 is looking to be Ian's year to grow and exceed everyone's expectations. We can't wait to see what is in store for us next.

Tuesday, January 6, 2009

Welcome to my first blog post, Jan 6, 2009

Well, I've finally decided to jump on the blog bandwagon.

So far, 2009 has started out well. Ian is now 3. Where did the time go? It just seems like yesterday he was struggling in the NICU and we were waiting for him to come home. I can't believe how fast these last 3 years have gone. Ian is now healthy and happy and being a typical BOY. It is weird how normal our lives have become since last May.

Christmas was a blast and Ian racked in the cars. Boy does he love cars or more precisely anything with wheels.

Ian had his 3rd Bday party with his three sets of grandparents on Dec 27 and as usual was spoiled. Poor kid gets all his presents in a span of days instead of spread out over the year. He now has wheels, a little electric 4 wheeler that is actually small enough for him to use.

Perry & I spoiled him for his birthday this year. Daddy built him a swingset in the backyard with help of course from Ian. The slide was a hit as was the rock wall. Now he wants out all the time and of course the weather isn't cooperating.

Got to go as the wheelman is running laps around the house.