Rew

– let’s devote a post just for baby Andrew. Poor neglected, spoiled darling little boy. He’s had more grandparent time than he could dream of and a much easier time than Oliver during this month. He started off very sick with the doctor mentioning possible RSV. His first few nights were so miserable and pathetic. His sad hoarse cry left me no choice but to keep him in bed with me to nurse and coddle. And it helped. His fever broke that second night by midnight and never came back and he was better much sooner than Oliver. Add to that a schedule of no mommy time for nearly 3 hours each morning and afternoon, no comfortable crib and no regular schedule and his sleep patterns are just awful! He’s in for a shock when he gets home because we’ll be back on schedule and sleeping in his bed whether he likes it at first or not. But honestly, at home he slept so well – long naps and long stretches at night. After the first day of protest I’m sure he’ll get back into the swing of things and be so much happier. His daily activities are perfect though- plenty of one on one time and toys. Our borrowed bouncer is one of his favorites and he can entertain himself on the floor for hours each day. I keep expecting him to get the crawl but he makes progress each day. I’ll post to you tube as soon as it’s obvious. He’s such a happy baby and his personality is already coming out.

Recent Dives...

have been going great for Oliver but not so well for me. I volunteered to go in with Ollie even though someone was there to go in with him. This was to give another mother a break. I couldn’t get my ear to pop as we went deeper into pressure. I thought it wouldn’t matter since it was my last dive – I wasn’t planning on needing to do any more. So I let it go further than I should have. I was trying all of the gymnastics, head turning, jaw stretching, behind the ear massaging things they suggested but it was still awful. Then I find out the very next day that I am needed to do both dives. So instead I babysat 3 kids each dive. Oh well. Probably better than having awful ear pain for the next week but certainly not as good as the internet research I had planned.

Brain Storm/Brain Fart

I was trying to be productive tonight while nursing my vacation-spoiled baby to sleep so I was brainstorming ideas for Oliver’s future baths. I was trying to think of the ideal bath solution that would include his love for playing in the water. Nathan won’t always want to/be able to bathe him in the tub and I mentioned to our service coordinator that we will be looking soon for alternatives. So I was just picturing what the ideal setup would be. I quickly went from thinking of just bath type setups to larger bodies of water. If we could combine bath time with year round aquatic therapy then we would be taking care of two major pieces of our IFSP (IEP). So the body of water would have to be deep enough for him to kick and his pool float thing is perfect for that. We would need to be able to get in with him or stand off to the side to support him. It would have to be somewhat tall but not too big if we want it to fit in the house. If we tried to actually use soap to bathe him then we’d have to get something friendly like a Bronner’s natural soap or something and then probably still have the water circulate somehow. So I’m picturing the container of water and going through all of these possible sizes and shapes and where it would fit in the house and how would we do it year round etc etc etc. Then it became all too obvious that I’ve really been missing out on the important sleep – due to the above mentioned spoiled baby – and that this sort of thing ALREADY exists! A hot tub. Haha I bet I can’t get Early Intervention to pay for that- no matter how I word it!

New odd things

I'm going to list the things that might seem odd but are definitely new, some seem small but are actually pretty big. 

Sleeping - he'll be in this weird stetched out position with arms overhead and hips twisted to the side or legs stretched out - instead of all curled up. 

Sitting - in his carseat or highchair he'll pull up a leg or throw it over the edge of the carseat in this very relaxed and flexible fashion - he'll pull up his knees more when in his highchair and show more movement than before

Sucking- now that he's using his right arm he is putting that hand into his mouth and sucking on it - he'll also suck on my hand - in a nursing sort of way, which although it sounds like something that is for younger kids is good for him because he sort of missed out on that behavior

Mood- it's good - that's all I have to say about that

Midway Point Update

Arms- right arm is frequently bending and extending with a purpose in mind – instead of sitting with his right arm at side in high chair he involves it with eating and when not eating for chewing on the fingers – when sitting in bumbo chair will lean on right arm if pillow is placed below to add height


Hands- chews on fingers of own right and left hand and will chew/suck on other people’s hands – hands are open more often – unsure of percentage at this point

Legs – seem the same

Hips/rolling – no additional increase in desire to roll

Sitting – is still difficult to hold in sitting position

Stiffening – since he’s been happier it has been happening less but that might not be a long term thing

Atnr – still as present as previously recorded

Eating- fingers and hands of self and others plus an increased interest in my food, has eaten very well cooked broccoli, biscuit, soup broths, cheetos pieces

Eyes- recently was caught tracking with both eyes very well- 100% together for the few minutes I was watching- have noticed his left eye crossing inward but need to pay more attention to know if there is a real difference here

Speech- Much more talkative, is it just because he’s in a better mood? Noises are more pronounced and louder but still lack apparent purpose and do not mimic what is said to him or sound like our words

Sleep – has been great once he falls asleep – is still spending a lot of time playing before falling asleep- one night stayed up until almost 10 – no crying, just playing

Naps – plays sometimes for up to an hour but naps very well until I have to wake him up – lasting up to 2 hours and starting around noon

Meds- the same

Awareness – Asked me about something for the first time ever. At a meal he kept looking up at the light above him and then at me so I went to the switch to show light on and off – he finds this hilarious – also enjoys door open and close etc.

Mood- much better, he is happier and quietly attentive when no entertainment is present

Social- doesn’t automatically get upset at oxygen technicians- will watch them to see if they will be doing anything to him. Will watch other kids - doesn’t really like others to hold him here at the center

Crawl-haven’t tried

Excited by – books, movies, family

Swimming- were not able to sign up due to time restrictions

Language – Now uses his eyes to point, ask or imply things – if you are reading the wrong book or he’s not sure if he likes the one you are reading, he’ll look at the stack of books – presumably the book he wants, until you ask him if he wants a different book – still likes his PECS book but not having as many opportunities to use it

Likes – elmo and has enjoyed other movies in the chamber- little Einstein/genius? – shaun the sheep- opposite games light on/off, where is games such as where is baby’s b-day cake book and other similar made up games of this nature, outdoors, creeks here in the mountains, eating and trying new foods, happy bday song and other songs, car rides even without elmo

Walk- enjoys it and is keeping toes uncurled, feet mostly flat and legs mostly uncrossed, right crosses a bit at times

Self entertain – still laughs at unknown things sometimes – in high chair or in someone’s lap

Nathan notices- more use of right hand, more talkative, more awareness – quicker to acknowledge desires, more expressive – louder, yes is more certain – easier to read – clear what he wants and doesn’t want – temperament is better – can go longer periods of time without being entertained by adults, can lift head up off floor when on back for longer period of time and it’s higher off ground, looking more at what he wants – looking with a purpose



Enjoying books more- we’re adding variety to books such as counting and pretend eating of ice cream etc

Wednesday

I hear that tomorrow will be halfway- 20 dives- although for us, 18, since we have missed 2.  I dove with Ollie this morning.  It wasn't bad but I can't say that I liked it.  Nathan comes tonight and then the other Webber's by Friday.  Since it's halfway I need to take time on Friday to list all of his possible improvements.  I promise I'll get that post done. 

Monday and Tuesday

I'm falling behind on these posts - it's been hard to get online.  Monday was a good day I think.  It's hard to remember although it's only Wednesday.  It's been raining here often and the routine is pretty much established.  Kind of dreary all in all.  On Tuesday Oliver missed his morning dive because his support person was late.  I cancelled an acupuncture appointment for myself that afternoon to go to the walk in clinic instead and get myself checked off to dive.  In Boone we went to the Earthfare again and TCBY - a treat that we deserved.  Both boys are pretty healthy and sleeping as well as can be expected. 

Sunday - first day off

We all really enjoyed the day off.  I hadn't been sure about what we should do and of course it's all risky with the possibility of no naps and crying children.  We decided on this place near Boone, NC called Tweetsie Railroad.  It's an amusement park of sorts for kids and I wasn't sure if we should go all out like that.  But all four of us napped that morning and when we woke up it seemed like a good idea to go ahead and have a big adventure.  It was a little more than an hour to get there.  When we walked in the train was pulling in so we loaded up and had a little cowboys and indians adventure.  Then we went to the kiddie place for the bounce house and balloon hat.  We stopped in at the fudge shop to eat and then caught the chair lift up to the petting zoo.  After that it had been 3 hours and we were ready to go.  The sky opened up in a horrible rain storm just as soon as we had the kids in the car.  It was such a great afternoon.  Andrew napped on the way home and we stopped at the store and still managed to get them in bed on time.  I'll have pictures up soon. 

Saturday

Oliver was in the best mood ever this morning. He tried to help me with his breakfast by getting his right hand in the way. He is used to using his left hand near his mouth but never his right. It was wide open too. He didn't fuss outside the chamber waiting to go in so he must not mind it too much. I hope we have an easy day. We're still trying to figure out what to do tomorrow on our day off.


He giggled throughout his second dive for no particular reason.  It's been raining on and off here and so we haven't had any real walks or adventures outside of the house.  I've been taking a lot of pictures but the internet has been having issues so I don't have much else up yet.

Thursday...Friday

Well, it's actually now Saturday and I just got a decent night of sleep last night so I'll try to remember the previous days. 

Thursday was a pretty average day.  Oliver's ears are doing alright, both kids are feeling better.  We went to Boone in the evening for an appointment with the acupuncturist that Oliver saw last November.  She said his pulses were much improved and I didn't notice much after the visit.  Well, he did stay up until 10 that night.  He was just playing in his room - happy as can be. 

Friday was tough, I was tired and the kids started to sound congested again.  After the second dive I was ready to fall asleep but the kids were in a good mood.  My mom and I took them on a 4 mile walk!  Their longest walk yet.  It was nice.  And my mom has been making great meals so it's nice to have that taken care of.  Oliver has been in a really great mood.  He fell asleep much easier although he really wanted his dad to read him a bedtime story. 

Wednesday

Last night was way better for Andrew’s sleeping but I still only managed two hours by myself before he spit up from crying and ended up in bed with me. The bed is two stacked mattresses, no box spring involved, and I’m glad he’s a mere 16 pounds because we sort of mush together in the middle as it is. Ollie slept nearly 12 hours and by the way was only 26 pounds when weighed in at the doctor’s office. I couldn’t keep Oliver’s fever down even with medicine so I was worried about the first dive. He must have passed his temperature test but he wasn’t very happy at the start of either dive today. Andrew was very good for his Grandma and I came home to help out just once in the two dives. I actually ran to the store during the first. The closest store to where we are staying is in TN. After the last dive I could tell that Ollie’s fever was totally gone and he hasn’t been coughing much at all. Andrew is coughing but it’s not as much as before and he is sleeping so much better that I know they are both on the mend. We went for a walk and had dinner. Andrew jumped in a floor model baby jumper while we ate. I need to get that video on the you tube website. Oliver wouldn’t let anyone read him a good night story but luckily Nathan was planning on calling in and Oliver was incredibly happy to hear Good Night Moon from him. It’s not too early now but I hope Andrew quiets down and I can catch up on my sleep finally.

Tuesday

We needed to have both boys seen by a doctor and luckily there was one in Boone that was willing to see them on such short notice. The drive took 50 minutes to the health food store that we wanted to go to first. Luckily I still remembered my way to and around Boone from last time. This took a lot of stress off. We got more than we meant to at the store and then shopped to mall to get some Radio Shack things and Ollie’s glasses shaped again. Those wonderful/darn plastic frames are so unbreakable/bendable and since they are affected by heat they are just unpredictable with how they’ll lay on his face on any given day. She told me how to shape them myself. The pediatrician was great and said that Andrew sounded pretty bad and Ollie’s ears didn’t look so great. But he took care of us and we made it out of there in barely enough time to get back to the center. We had already missed the morning dive for the doctor and I didn’t want to miss another. We made it with time to spare. My worries rarely pay off. Ollie was tired after the dive because no one got any naps today. He ate alright and both boys were in bed by 7. It’s just after 8 as I write this and it’s where I’m headed. Maybe tomorrow will feel more calm and routine and I’ll have more energy to write more interesting things.

Monday

After the second dive on Monday Oliver seemed really hyped up. He was in a great mood on the way back to our place even though we didn’t have Elmo on his video player. Somehow he stayed up a little too late – something I don’t usually do. There isn’t a clock in the main room but I think it was because he was in such a good mood (rare for the evenings) that I didn’t think of his bedtime as soon as usual. I think remember from last time that for the first few days he was more hyper but that it didn’t last. Some people report being more awake or more sleepy and also that their hunger level increases. He ate a TON of food that evening too. So he got to bed late but slept well.

We're here

The trip here wasn't too bad.  We picked up my mom in Greensboro and the kids fussed for the last 2 hours.  We had a rough evening getting settled and getting groceries and Rew was pretty sick.  He spiked a fever and almost as quickly it was gone.  He's sick enough to prevent me from getting any sleep though and then I found out the coffee maker was broken.  Oliver seems to be sick as well.  Both boys have an appointment with a pediatrician in Boone, NC tomorrow morning so we'll miss one dive in an attempt to not miss all the rest.  I've been a bit stressed trying to sort things out here in our new home but I know that in a few days it will get better.  The 2 people that took Oliver in the chamber last November are with him again this time.  If it would make him fuss less I would go in but he might just fuss more hoping that I would understand that he just wanted out.  I'm not so sure Andrew will sleep better tonight- and Oliver for that matter so it's a good thing we'll be in town to buy a new coffee maker tomorrow.  We're also going to hit the health food store and hopefully the acupunturist that saw Oliver last time.  Oliver is mostly fussy in the chamber at this point and I'm giving him all the medicines and supplements that I can think of and besides keeping my fingers crossed there isn't much else I can do.  We only have internet at the center and only have phone at the house.  It's raining and a bit cold here - I wish I had some jeans and a sweatshirt but I'm sure it's worse for my mom being from Florida.  I'll try to post daily.

Assessment

We did this before, during and after the last treatment.

Awareness - was getting upset at end of elmo grouchland but stopped after just one week, likes facial expressions in movies, still gets upset if adult acts upset, thinks sadness (pretend crying) is funny though, PECS helps him anticipate choice
Mood- not so good, doesn't love to be alone, but will laugh for no reason- seems to self entertain sometimes with no toys, some say they can't do anything with him, grumpy, difficult to entertain
Social - likes his brother, will smile at all people, likes to watch other kids play around him
Stiffening - not as bad as in the past, still a hinderance, will use this as a physical response for "no" or when he dislikes something
Leans to his right
ATNR - moderate and present when he's not angry
Startle - comes and goes but doesn't last more than a day or two- is always present first thing in the morning, walking instead of being carried helps
Likes- counting to 123, anticipation, other daredevilish type things
Self-entertain- will for AF and no one else
Excited by elmo, parents, swimming, Pecs, food, dad's funny voices, tickle anticipation, anticipation in general, books, funny faces
Swimming best form of therapy now- increased range of motion in legs
Eyes - open more with glasses, seems to see better, better focused, not as glazed over, sometimes favors his left eye more, crossing isn't quite as noticeable, n says it is the same, hard to say if one crosses more than other
Eating- 75% by mouth, as of 3 weeks ago, skills have improved, can eat for various people, consistency has to be thick, still bad with liquids, enjoys varieties, tongue moving better according to ST, will sometimes incorporate hands into eating process
Speech- playing around with sounds on occasion, did a shriek of delight similar to Rew's, is louder, tries to get attention with a noise, definite yes noise, sort of fading in importance with the use of pecs, has to be promopted to make  yes noise sometimes, no repetition of noise from request, doesn't copy, not yet moving sounds towards words - PECS - understands it and choices most of the time, accuracy is spotty but more accurate than previously thought
Walk- likes it but not so good at it - flops toward ground- leans etc
Arms - decent range of motion, very stiff, very limited voluntary motion, almost no bending at the elbow unless in ATNR posture, moves slowly, some gross motor skills, no fine motor skills, limited grasp
Hands- open and relaxed 30-40% of the time, rarely trying to grasp objects, accuracy still bad when grasping
Hips/Rolling- lost interest in rolling, decent roll over right arm, not rolling over left although has in past - and will end up on floor in room - having had to go over his left (?), hips somewhat flexible at all times, slow roll and infrequent
Legs - tight in hamstrings/hips, knees and ankles, walking with only minor crossing, frequent curling of toes while standing or sitting, slight inward turn of feet, difficulty with voluntary and controlled motino, good movement in the pool
Sitting - bad
Sleep - through the night, bedtime around 8, wakes 5:30 to 6, might wake once in middle of night but not fed, will play a whole lot more at nap and bedtimes
Nap- within 4 hours of waking lasting 2 plus hours- sometimes taking more than an hour to fall asleep as he plays
Valium- just moved to twice daily at .75 am and then 8 hrs later
prevacd - one solutab daily - no signs of reflux - occasional gag when stomach is empty (rare)
Crawl- doesn't try much lately

Preparing for #2

We've signed up for a second set of 40 dives for Oliver in July.  We're doing this in the middle of his new ABM therapies but I think they will compliment each other well.  And I'll have help this time with family and friends so it shouldn't be too much harder even with both kids.