This has been the hardest summer physically, mentally, spiritually and emotionally that I have ever been through. These last 3 weeks sealed the deal - tough. but i can say I am learning and growing faster than ever before. hopefully i am changing in the process. all those stories will be for another day.
UPDATE ON KYLE:
3 weeks ago I was in between weeks of 220. I am the administrator of these conferences - or was - (this past week was my last week of 8 years of serving as the admin for 220 SLW). WOW -that is bitter sweet to even type! I will of course still attend some and be involved through prayer and encouragement - but Kyle needs my attention right now. He wins!
so - on to his update - 3 weeks ago kyle had 6 (7 if you count a revisit!) doctor/therapy visits. then we left town for the 3 trip and this week we have 5. we started the week with 4 then went to 6 and now we are at 5 and it is only tuesday night. In addition to kyle I work 2 days a week (only 5 hours each day) and one of those weeks my awesome babysitter was out of town. oh and there were conferences to prepare for. but the business is not the problem. I am cutting back on my work to one longer day a week. I have resigned from the admin of 220. so now I will focus on kyle and jadon and jack and john. wow - that is alot of boys to take care of!
so why all the visits and why the increase in attention for kyle? Kyle's doctors are getting concerned as to why he is not weaning on his oxygen. He has had amazing weight gain - he is 17 lbs 6 oz which is between 5 and 10% on the growth chart - really! the one for a 9 month old! however even thought that thrills me - the doctors are concerned b/c he should have weaned. he only started on 1/8 liter. he has been tested for pulmonary hypertension and is clear of that. So pulmonology checked him out 2 weeks ago and they feel like he is having micro aspirations - it is hard for me to believe b/c I feed him all the time and he seems to eat fine. now since we started cereal he has been gagging and spitting up more. but still has not trouble with his bottle. she also thinks kyle has reflux - which shocked me b/c he has good weight gain and the only person crying when he spits up is me b/c i am so tired of changing outfits and smelling like spit up! but really it does not bother him to spit up. she looked at his throat and said it was only mildly red. but he does have the slow stomach emptying b/c he can spit up frequently several hours after he eats. but he never spit up when he was only on the bottle - only since we have started cereal. but the pulmonologist feels like he may be refluxing just enough to aspirate. She diagnosed Kyle with floppy cartilage in his trachea and/or esophagus. This makes the aspirating and reflux more likely. this is a problem caused by being a preemie - and the neurological concerns for kyle make this all the more important to dig into. The other side of this is that during kyle's sleep study he had 12 apnea episodes and was hypoxic after just 3 or 4 minutes. This was not great news to them. However he does not have these episodes at home - or let me say he does not have apnea episodes that last longer than 20 seconds b/c that is what our monitor would catch. He has also been having frequent de-sat episodes - so all of this together tells her that we want to do a swallow study, an upper GI and another sleep study.
i have mixed emotions - I am going TOMORROW for the swallow study and upper GI. I am very concerned about the study. I have heard of babies aspirating the barium and being severely injured from it. I have heard concerns about the studies but several of our doctors - I got 3 other opinions feel like if kyle is aspirating - it is dangerous for him. So we move forward.
the good news is that I started monitoring kyle's pulse ox closely again and he has not been de-sating anymore. at least not much. I even started pulling him off his oxygen for bits of time and he stays steady at 94 and one time 96. this is during sleep. he took a whole 2 hour nap earlier this week and never de-satted below 94. then when he was sitting up playing in my lap he was satting 97 - this is all off oxygen. on the oxygen he is still around 98 and sometimes 99. I also did this feeding him and he satted around 96 during most feedings. his heart rate was up to 150 or 160 during feedings but would be around 110 to 115 all other times. not sure if this is normal? so I feel like he is making progress - so I called 2 of kyle's doctors and they said that 4 days doesn't take away 4 months of desats so we should go ahead with the study. so we go tomorrow.
i would love thoughts about any of this from other preemie moms. is it normal for them to do great with a bottle and then have trouble with cereal?
oh - that is the other part - after pulmonology we had therapy that week - Kyle has a couple of reflexes that have not integrated yet. she said this can be a sign of CP and for now we will give him more time. the other thing is that during the 2 week of our travels kyle started tongue thrusting and sucking on his tongue. Kyle's physical therapist said by my description that she did not think these were seizure related (her biggest concern) but still things that she did not like to hear. however - we met with a speech therapist and she gave us some exercises to do and if kyle gets it in a month then we will continue but if not we will start speech therapy. we are 2 weeks into this and we are very diligent about our exercises and I am not sure I see improvement. but I know what to do and we are definitely on top of it. I would also love to hear from some preemie moms out there if you have any thoughts on this. I really thought that kyle did so good at the bottle that we would not have ANY eating troubles and we might not - but she is concerned about mouth coordination and some oral fixations for kyle. She also said that she is noticing some left side weakness in kyle. this is strange b/c he was given a prognosis of right side cerebral palsy. I see the areas that she mentioned and we have increased therapy for this and increased and changed his infant massage.
so please be praying over kyle in these areas. and please be praying tomorrow - or today - wednesday - for the studies. honestly - I am really scared - i am on my guard though and praying constantly. please beg for physical protection for him today.
so for the extra attention of mine that kyle will get ... ... doctors visits for kyle are increasing but my hope is that this will settle down in a couple of months. However both of kyle's therapists have said that his need for therapy is increasing. and we should expect to stay deep in this for the next 2 to 3 years. One of them told me that for a child like kyle, at least in what they are seeing, our involvement and willingness to work several times a day at therapy and infant massage over the next 2 to 3 years can mean the difference between "he has cerebral palsy" and "you would never know he has cerebral palsy". this does feel like alot of pressure but when has raising kids not felt like alot of pressure! I am just realizing the priorities in my life. I would give up any activity in the world to give kyle the best chance at life he can possibly have! His physical therapist said that he is a great learner - that she could really tell what we had been working on and that he was learning fast! She also said she loved his positioning!
thank you for your prayers today!