Tuesday, June 2, 2009

Where did May go?

I can't believe it is June.... seriously - where did May go? I am worn out, totally exhausted - not eating right, not drinking enough water and broke my exercise routine. I know where May is..... walking away and leaving me drained. What a month! So.... let me try and recap:  

1 - John took an 5 night a week course for the whole month of April to become a CNA (certified nursing assistant). In May he took his state exam and passed - yeah John!! He has since been hired on by a local agency in the Springs and assigned to Peter. Because Peter's gaps continue to broaden between him and typical kids - the state will assign him a CNA to handle his care. Fortunately for us parents are able to do it - so we have the comfort of knowing John is still caring for Peter during the day and has the training to support him from a medical perspective based on Peter's needs.  

2- Alexandra - this was a crazy busy month for my princess.... she was accepted to St. Mary's High School - a college prep in town earlier this year. She took some testing and actually was able to test up into higher level spanish and english classes. She also joined the school's softball team despite not having played before - training has started and actually as I type she is at her first game with John and Michael....8:45pm game is a little late for the little boys. This last week Alexandra graduated from Corpus Christi Catholic School - she graduated with high honors and we hear was in running for valedictorian but didn't get it. I think she is glad to be done with school. Friday she received her confirmation - another big milestone in her growing up! She continues to tower over me and gets more beautiful by the day. She is doing acting again this summer and really looking forward to it.  

3- Michael - a bit of a quieter month for him thank goodness. He did graduate 5th grade which was bitter sweet for him. We are moving him to a charter school in the fall which he is not too excited about it. He is going to miss his friends! So while he is excited to have summer break - he also knew he wouldn't be going back in August and that made him sad. We have agreed that he will try the charter school out for a year - following a very traditional curriculum. If after a year it is not a good fit, then he can go back to CC. Michael has started baseball for the summer - games start next week. He is very excited about that.  

4 - Jack - I bet school is glad to get a break from my incredibly loving but terribly mischievous young boy. Hate to admit it - but this month he got himself kicked out of school for a day.... he hit someone he thought had stepped on his lunch, then hit another kid he felt was sitting where only the teacher should be. He has been working so hard on controlling himself, using "I" statements to explain his feelings, counting down when angry... all the techniques he's been learning. But, he had a bad day and I had to go pick him up from school. Now I feel cruel admitting this, but I went to Starbucks after picking him up - got myself a drink and he wasn't allowed to get his traditional cup of whip cream. I think that was torture for him - but he did say "I assume I don't get whip cream today".... to which I said "You're right". No temper tantrum, he took it like a big boy but was very very very disappointed. He was sad school was over and says he's ready for first grade... we shall see if first grade is ready for this bundle of energy. He has asked to take tap dance classes - so we are going to look into it - may be a good outlet for those constantly on the move feet of his.  

5 - Tom-Tom - what a character! He is so excited to have his siblings home for the summer. I have noticed such a change in the last week since Jack wrapped up school. Tom-Tom and Jack are attached at the hip and it has brought out the tough side in Tommy. The part John and I enjoy the most is being in the other room and hearing them create their fantasy worlds again..... the burning lava, the sharks circling the couches - space communicators, flying ships and all else their big imaginations create for them. Tommy is having the time of his life having them home - despite of course the occasional drama moment most siblings have - right? 

6 - Peter - how to fit it all in?? I'll follow my sorority tradition with pro-con-pro approach to this update. First pro: Peter turned 2. WOW!! Two years since he rushed into the world and established himself as a NICU favorite. Two years since the day my heart soared with his birth and cracked with the fear of loosing him. Seems so long ago with my little international traveller - I honestly don't remember my life without him. Peter interestingly doesn't really like sweets - so we celebrated for him! He does however love salty food - so show him a fishy cracker and he is inhaling it!!  
The con: and this does technically fall in June but - might as well get it out there since today is my assigned day to be ok being sad. We had Peter's follow up cardiologist appointment yesterday. It didn't go well. His oxygen sats were low, and his pulmonary pressures were elevated almost to where they were post heart surgery. So well out of the "normal" range. As the doc recorded his notes he added Pulmonary Hypertension back to what seems like the never ending list of diagnosis for Peter. My heart broke! We don't know why his numbers are up - and he needs to go back in a month. Peter continues to have a reactive pulmonary bed, so it may be as simple as a combination of the cold he seems to have and the storm that was coming in during his echo. Yep, doc says storms can mess with little kids like Peter making their sats drop and pressure rise. On the opposite end of the spectrum it could be heart/lungs/etc. Today I am just sad - and tomorrow pick back up with moving forward. At this point we are going to get through the cold that seems to have got worse today, we will do an overnight O2 sats study and home, and then in July go back for another echo. We are going to try and schedule an overnight sleep study for later in the summer to see if adenoids/tonsil/other are complicating it further. Doc considered putting Peter back on oxygen during the day - but recognized that would be about impossible. So for now we have doubled his oxygen at night and need to check his sats, etc. What can I say - I'm sad - I really thought we were through this challenge. Doc said we will be dealing with this the rest of Peter's life - he will have to go for regular cardiac check ups for ever. Sort of daunting really. Can't hold onto that "when xyz happens, this will be over". No such thing as really getting over it - but I still hope it will get better and he can lead a normal life off of oxygen. Prayers please!! 
The pro: Peter is getting closer to walking!! Now - keep in mind, closer in our world means much longer than with a typical kid.... but he is working on it! He will push anything that moves and getting quite fast at it. He is cruising where possible and bear crawls all over. His latest challenge is working on balance. He will push or pull up to stand and then just stand unassisted. Lasts but a couple of seconds - but he is sooooo proud of himself. And he does it constantly! He just continues to persevere and fight forward. He is trying so hard to talk and trying out sounds. He added "hungry" to his sign language repertoire. He's doing better with eating (knock on wood) - and is feeding himself off a fork. We put the food on the fork - he will put it in his mouth and pull the food off - then he will put the fork down as a sign he is ready for more food on it. He loves steak and any pasta with alfredo sauce.... just like his dad!  

Anyway - John, Michael and Alexandra are now home. It is late - I can go to bed knowing all are home safe. Peter is tucked with his oxygen on. Jack and Tommy are finally asleep - but in my room - so John is carrying them to bed. I got no sleep last night after the cardiologist - so hoping for a bit of restful sleep tonight. I am including photos - but think I am missing some on my PC. So please check out the blog again for more photos and will try to get more posted in the next day or so.  

Love to all - catherine