In The Lions' Den

Therapy for Week of 8/1

2011-08-06T14:34:00.000-07:00

We only had Child Development this week because I had a migraine (which means we couldn't drive to Sacramento for speech) and Daniel's PT was on vacation. Al worked with him on putting shaped puzzle pieces into slots and putting shapes into a jar with shaped slots. He doesn't seem to be very vocal for her until the end of the time so I'm hoping that he's more vocal the next time we have an appointment with her.

Therapy for Week of 7/25

2011-07-28T13:45:00.000-07:00

We ended up having speech and physical therapy on the same day again this week because of crazy scheduling on the part of S, our physical therapist.

Child Development: Al played with Daniel using blocks and some things that require him to sort. She hadn't heard him speak before so she was excited when he started babbling at the end of things.

Speech: We worked on signing "more" and worked on the word "in" where he was putting shapes into a jar with shaped slots at the top. He tolerated the Nuk brush a bit more. He also as vocalizing "mamamamamama" and "ffffff" in addition to the "ar" ending when we were singing "Twinkle Twinkle Little Star" with him.

Physical: S took him outside for more walking practice and had him kicking a ball in our yard. He's still doing the one-finger hold while walking and is more confident cruising along holding on to the walls.

Therapy for Week of 7/18

2011-07-20T20:25:00.000-07:00

We ended up having speech and physical therapy on the same day this week because of crazy scheduling on the part of S, our physical therapist.

Child Development: Al played with Daniel, working on his fine motor skills. She had asked me what I wanted in terms of goals for him with her work and I responded that I wanted the fine motor skill work (we're on a waiting list for OT) and to work on naming body parts. Her therapy is just playing with him and getting him to interact and engage with her.

Speech: As Daniel got irritated being in the high chair and doing face-to-face with An last week, we had all of us on the floor and we'd do a little bit of work, let him play/have some Pediasure for a few minutes/work/Pediasure the whole appointment. We did well with clapping games and we found that he did well putting shaped blocks into slots. He knows the word "in" and we're making progress on "more". He and I have been playing "Peas Porridge Hot" and doing body parts (i.e. "Eye likes it hot, eye likes it cold..." while pointing to the body part). She is also amused with his mad pattycake skillz.

Physical: He's in a mode where most of his progress is in this area. He's now able to walk only holding on to one finger and we're trying to get him to feel OK standing by himself. S can get him to do it if he can hold on to something, deluding him into thinking he's holding on to one of our fingers. He also does much better working in his sandals than barefoot.

Therapy for Week of 7/11

2011-07-13T15:26:00.000-07:00

I'm going to start posting progress weekly on how Daniel is progressing with things.

Daniel had a doctor's appointment on Monday and his physical therapist is gone so it was just speech therapy this week. He was a bit of a grizzly bear about the whole thing (partially because I had left the room briefly at the beginning) so it was like pulling teeth. We've also discovered that he would rather we did stuff on the floor than having him sitting in a high chair to work with An, his speech therapist. (I think he associates being in a high chair with being fed and he gets mad if that isn't the case.) He knows the sign for "more" but would rather make it with my fingers than do it himself. We're also working on identifying body parts. He knows pattycake well enough to make my hands to the motions and then do them himself if I don't do it fast enough.

Not the best session but we're new at this.

Belated Thanks

2011-06-29T13:49:00.000-07:00

As I'm sitting here listening to Daniel grump at S, his physical therapist from Easter Seals, I'm realizing that I owe some serious thanks to two wonderful people.

Melinda was his physical therapist at Milestones and she pushed through sessions where he screamed at us for 45 minutes straight and got him sitting up and starting to walk while holding on to fingers.

Jael was his occupational therapist and worked with him on his eating and on his fine motor skills.

I'm grateful for the opportunity to work with both of them and for the progress they helped create.

Alta California Regional Center and Update on the Lovenox

2011-06-02T19:42:00.000-07:00

It's been a crazy two months in which I've been dealing with Medi-Cal and California Childrens' Services to get Daniel's bills covered. March and onward is OK -- I'm trying to get them to retroactively cover February. This is requiring at least 1-2 hours on the phone with people but it will hopefully get resolved this week.

The Regional Center up here (Alta California) apparently didn't get Daniel's paperwork so everything had to be re-transferred. This is meaning new intakes and evals. The occupational therapist with Easter Seals was at the parsonage today and Daniel played well with him. Speech and PT should hopefully follow in the next week.

Since I last posted two months ago, Daniel is now surfing and climbing on everything. He will also bring his bag of yogurt snacks to me and put them in my lap as a sign that he'd like one (NOW!). I put one in my hand and close my fingers around it, making him have to peel my fingers back. In addition to yogurt snacks, he is also now a fan of Cheerios for a snack which means he's now getting LOTS of fiber. Unfortunately, he's also learned that it's fun to throw Cheerios off the coffee table.

First Week Home

2011-03-24T21:55:00.000-07:00

Daniel's bloodwork came back good so he's free from blood-letting for two weeks. He still has shots but it's one less poke next week.

He is finally comfortable taking a nap or sleeping in his playpen. He actually came back to bed with us on Monday but agreed to sleep in there on Tuesday. It's nice because I have a little more space on my side of the bed again though I do miss him -- he's a good cuddler.

His follow-up appointment went well despite none of the hospitals sending records to his doctor. (I signed release forms for all of it so things will hopefully be there by the time he goes in for his 2 year old Well Child appointment in two weeks.) His doctor was blown away to see a healthy, happy little boy -- 180 degrees from what he had seen three weeks earlier when I brought him to the clinic in Sacramento.

We're working on the walking and I'm bribing him with yogurt snacks to pull himself up and "surf" on furniture. On the other hand, surfing usually means that he can get into things that he probably shouldn't so he's been amenable to it.

Progress is being made.

First Weekend Home

2011-03-21T19:04:00.000-07:00

We got through this weekend. Daniel relaxed for baths as long as I was in the tub with him and today, he took a bath by himself and played happily in the tub just like he used to. Score!

On Saturday night, he discovered a fear of his crib. He'd taken a nap in there normally that morning and had slept in it on Thursday and Friday night but he was just afraid of being separated from Jon and I. We tried putting him in the playpen in our bedroom but he still howled. Around 11:30, I finally put him in bed with me and he slept the rest of the night in our bed as well as the next morning. (He's a cuddly little bear now so this was fun.) He slept with us last night as well and right now, I'm trying to transition him to the playpen. He howled for about 20 minutes until I put on the classical music I have on iTunes. He settled right down at that point. Apparently, Bach has a soothing effect on him just like it does me.

He's back to taking the kitchen cupboards apart and I keep putting little things in them for him to play with. He didn't lose too much muscle tone while he was intubated and any that he lost is being redevelped VERY quickly.

He has an appointment for bloodwork with the Coumadin Clinic tomorrow and a follow-up appointment with his normal doctor on Wednesday afternoon. I did the first part of the bureaucracy to get his extraneous hospital bills taken care of this morning (which was hateful but worth it if I'm not ending up with a five-figure medical bill).

Things are progressing...

Details on Discharge

2011-03-18T22:20:00.000-07:00

We got discharged late in the day due to the pharmacy having to mix up Daniel's Lovenox. (It's a weird dose because of Daniel's age and size.) We have to go to the Coumadin Clinic at some point next week and Daniel will have the shots and bloodwork for the next 2 1/2 months. Argh.

The feeding tube came out on Wednesday night. Daniel exceeded his nutrition requirements even though we were having to give him vanilla pudding, banana baby food, and whatever else we could find that he'd eat. He thankfully drank his Pediasure like a good little bear... as long as I was singing something to him to the tune of "Twinkle Twinkle Little Star". The funny part was having conversations with the nurse and respiratory therapist while singing things to that tune.

He's been home for a day and we're finding that he's very clingy because of the experience (not the worst -- I've been missing having a cuddly little boy) and he's also afraid of his bath. That last one is weird because before this illness, you couldn't get him out of his bathtub. Theories are that it's either painful for him to have the bath or he's afraid of the sound of the running water.

I have to go deal with bureaucracy in Sacramento next week. I'm hoping Daniel is approved for California Children's Services -- it would take away whatever portion of the hospital bill that insurance won't cover.

Finally

2011-03-17T21:59:00.000-07:00

Daniel was discharged today. Will update tomorrow with details.

Progress

2011-03-15T16:24:00.000-07:00

Swallow test is provisionally passed. If he can meet certain food goals by tomorrow, his feeding tube can come out. So far today, we have had:

8 oz. of lowfat milk
4 oz. of pudding
4 oz. of baby food bananas
8 oz. of Pediasure (which means no feedbag tonight)

If we can get 8 oz. of liquid and 8 oz. of pudding/yogurt/food consumed tonight, we'll be golden.

More Shots

2011-03-14T22:06:00.000-07:00

After not getting to bed until 2 a.m. because a certain little bear (who we'll call "Daniel") decided to take his crib apart, I got woken up suddenly this morning to go to radiology so they could re-assess the clot. The news: it's better but it's still there so I'll have 3 months (not the six weeks they originally told me) of Lovenox shots to give Daniel twice a day. Grump. Grump. Grump. Grump. Grump.

He also has to pass his swallow study tomorrow or go home on a feeding tube (which would be a new level of purgatory for his mommy) so please pray that he does. The test is at 11 a.m. PDT tomorrow.

Otherwise, he's his normal self and getting into mischief. He just got his feeding tube put back in and is going to have "no no's" (braces that prevent him from bending his arm) put on if he takes it out again. I've had to learn how to work the pump for his feeding tube (and I know it well enough that I even taught the student nurse how to do it today) so I'm semi-prepared. I just don't want to have to deal with finding someone to put it back in if he takes it out at home.

He has the nursing staff wrapped around his little fingers. The charge nurse gave him lots of cuddles today so that I could take a nap... and bathed him while I was at dinner because Daniel decided to experiment with taking his diaper off. (I'm leaving it at that because the rest of the story is too foul for consumption.) He also charmed the volunteers and student nurses who took him to the playroom today.

As for his lungs, they're healed and we haven't had to talk to respiratory for a couple days. It's a pity because the night RT is an aging hippie and he's just a joy to talk to.

I do have my bear back... almost.

**UPDATE** The tube pulled out so he's having to go to the Treatment Room to put it back in and his no no's are being put on. I forcast an *interesting* night.

Peds Unit

2011-03-12T15:13:00.000-08:00

We finally got moved to the regular pediatric unit yesterday afternoon. They were packed solid on Thursday night and had a waiting list so we had one more day on the PICU. He's now sharing a room with a 9 month old boy and my half of the room sans crib is bigger than the room we were in on the PICU.

The nurses have started my instruction into Lovenox shots and I actually asked to do the one last night because I needed to start learning to just do them. I've now done two so far and while I hate it, it is probably going to be a necessity. I did talk to the doctor about reassessing the clot and she said they could easily do that so he might not have to go home on the shots.

He unfortunately did not pass his swallow test for liquids so he's still on the dratted feeding tube. I think he'd really like a nice apple juice bottle right now but they can't give him one until he's cleared by the speech therapist. Darn. He is, however, allowed purees and instead of just giving him lumps of food, the hospital staff actually shape it into whatever it's supposed to be. He's eaten chicken for the first time and we've discovered a like of vanilla pudding.

He continues to be grumpy but that's more because he's feeling sick and can't vocalize it in words yet.

He might be out of the hospital next Wednesday at the earliest.

More Changes

2011-03-10T10:40:00.000-08:00

The little bear failed his swallow test yesterday -- he really wanted a nap and apparently, the nurse and speech therapist didn't understand that and were trying to force him to take a bottle and to try solid food. Not a good thing.

He might get moved to a regular pediatrics unit today. Prayer requests are as follows:

-Pray that he passes his swallow test for both liquids and purees. He can't go home until he can eat.

-Pray that he doesn't have to go home on Lovenox shots for the blood clot in his leg. I'm going to push that they reassess it before they think of discharging him.

-Pray that we can get some support for me set up in the form of follow-up appointments and such.

Grumpiness

2011-03-09T13:04:00.001-08:00

Daniel had one day of the mask and they switched him to a cannula last night. (I apologize for not updating yesterday. I slept badly and ended up taking too many naps.) He was in a good mood yesterday and had a student nurse catering to his every whim. Today, he's a grumpy little bear, having been woken up from his long winter's nap at 10:00 a.m. for meds and bear care. Child Life came and played with him while I was at lunch and he got crabby when he saw me. I snuggled him and he was falling asleep in my lap... and then respiratory came to do some therapy on him. Currently, the speech therapist is here to do some swallow tests so we can maybe start feeding him.

Possibilities

2011-03-07T12:05:00.000-08:00

A certain little bear is due to be extubated his afternoon. (Translation: the plan is to remove his breathing tube.) They'd put him on CPAP and probably sedate him so that he doesn't fight it but hey... this is a BIG step.

In good hands...

**UPDATE** The breathing tube is out and Daniel is plotting ways to remove his oxygen mask.

Moving Around

2011-03-06T20:31:00.000-08:00

Daniel is no longer on the paralytic and the ventilator settings are such that he initiates his own breaths and the ventilator gives him the air pressure. It's a step in the right direction.

They've also cut his sedation a bit so he's moving around and he has restraints on his arms to keep him from pulling out tubes. (He is at that age after all.) He also opened his eyes a few times today so I got to see his beautiful baby blues.

I'm hoping for a quieter night than last night when I had people in my room doing stuff. I'm also hoping that x-ray comes at a time other than 4 a.m.

On His Own

2011-03-05T22:20:00.000-08:00

They're cutting the paralytic in half so he's starting to move around. This has meant that I can have finger-holding time with him. It also means that he's slowly starting to breathe on his own again. He behaved while I was at dinner with Mom and Dad and that helped. I'm slowly gaining trust that I can go do things to be human (like go to the Ronald McDonald house for a shower) without him having a crisis.

Jon is currently reading him stories. They seem to help. I know that he knows we're here on some level. He's not comatose -- he's just in a long medication-induced hibernation.

I really wish we knew what triggered this and why it hit him so fast. Preemies tend to have reactive airway problems but this is just bizarre. I'm hoping and praying that there's not any lasting damage to his lungs or heart from this. He's doing well but there's the mother guilt I have that maybe I could have caught this sooner and avoided all this. Then again, I *did* fight for him to get seen by the doctor on Sunday and I *did* insist that this wasn't normal.

I just want my little bear back. I know this sounds tear-jerkingly sad but I miss his babbling, his smile, him fast-crawling everywhere, and getting into everything. I know that they're doing everything they can to help him and that I will have a healthy kid eventually -- I just have to be patient.

Tantrum-Free Day and Night

2011-03-05T12:41:00.000-08:00

We made it through yesterday and last night without a bad spasm. Praise God!

The trick has been to make sure he's sedated before they do things like move him, suction him, or touch him for things. They were able to rotate him last night and he was fine. We've had a great team the last two nights and my favorite of the PICU doctors was on last night.

He's still intubated and still sedated though the sedation lightens on occasion and he'll start moving his fingers and toes. It makes him look less comatose (which he is not) and more like he is just taking a long nap. Given that his nickname is "Little Bear", it's forced hibernation for him to enable his body to fight and his lungs to get a handle on the situation. The machine is taking 18 breaths for him per minute and he's taking a few on his own.

They're giving him 30 ml of Pediasure (30 ml = 1 oz.) per hour to keep his stomach going and right now, they're giving him a laxative to try and stimulate his bowels to move. It's better than TPN (IV nutrition) and they're also giving him various electrolytes to keep those balanced.

Right now, it's looking less like a couple days left and more like a matter of weeks depending on how long he has to be intubated and how long he has to be in the regular Peds unit after he gets out of the PICU.

Hoping for a No Tantrum Shift

2011-03-04T12:19:00.001-08:00

Last night, Daniel had a small tantrum but they were able to get him out of it by bagging him for a few minutes. (I have no memory of this so I was probably dead asleep.)

Our goal for the day shift is for him to stay stable and not have any "tantrums" where his sats and heart go haywire. They're upping his feeds today and trying to back off on the ketamine for his spasms.

*crosses fingers*

Late Morning Tantrum

2011-03-03T18:49:00.000-08:00

Daniel decided to kick off in the late morning -- I had just gotten back on the unit and was about to go in when his nurse called out "I need help!" People swarmed the room and I heard a Code Blue being called on him. I stayed outside the room and just prayed while one of the residents went to get the attending physician. They got him stabilized quickly (the whole thing was maybe 1-2 minutes total) and the doctor kept telling me that he was OK but it scared the pants off me. Apparently, the nurse had tried to turn him and he didn't approve. I was really upset so the doctor called the social worker to help me get my bearings back.

Thankfully, the little monster behaved for the rest of the day and let me have lunch and go for a couple walks. I like the nurse, resident, and attending for tonight so I'm feeling OK (not great but OK about things). I need to trust that Daniel will be OK and that the tantrums will cease or at least not unnerve me so much. Easier said than done though...

Morning Tantrum

2011-03-03T09:42:00.000-08:00

I was going back to sleep around 4:30/5:00 this morning when I heard Daniel's monitors start beeping and my room filled quickly with people. The nurse had tried to bathe Daniel's back and he had a "tantrum" (i.e. severe bronchiospasm in which he drops his oxygen saturation and his heart rate). They got him back up and were joking about it with me (which was possible at the time due to sleep deprivation). Meanwhile, I was just sitting there praying (which the respiratory therapist commented was some "good vibrations in the room").

His doctor is NOT amused that it happened. On the other hand, his legs are starting to feel warm again and his fever is gone (or at least it was before I came down here for breakfast). They're giving him TPN (basically nutrition via feeding tube, I think) and they're replacing electrolytes as needed. His GI bleed seems to be resolved so feeds are OK.

I got 24 hours of him behaving and being stable without a crisis so I'm dealing OK with this morning. (I'm not amused but these things will happen.) He's stable now and right now, that's all I'm wanting.

Quiet Day

2011-03-02T21:33:00.000-08:00

There have been little tweaks all day today but Daniel has stayed stable and we haven't had any crises like we had in the last three days. (I *NEVER* want to have a night like last night AGAIN.) They have him on a helium/oxygen mixture (heli/ox) which apparently helps the oxygen go in better and his blood gas numbers have been good.

The respiratory tech wanted to see pictures of him as a healthy baby so I opened up a folder of them I had. Several of the other nurses came in to look as well as one of the doctors. All admired his eyes, his eyelashes, and his curls (which are unfortunately gone). Hopefully, I'll have the baby in the pictures back soon...

A friend from college called me up tonight and offered to take me to dinner. We went out for pho and it was a nice two-hour break from the hospital. The staff is encouraging me to take meal breaks and to get off the unit. I'm doing my best. I know they'll page me if there is a problem (they did last night) and I'm slowly getting away from jumping every time I hear the words "Code Blue", especially since it usually isn't the PICU.

So... good news for a change. I'm just praying that we're turning the corner right now.

Stable Through The Night

2011-03-02T09:55:00.000-08:00

Daniel held stable through the night. I got kicked off the unit because they had to keep his room clear in the event that they might have to put him on ECMO in the middle of the night. I made myself a pallet on the floor of the "quiet room" down the hall and slept there (actually sleeping pretty well). He's still hanging in there this morning and I'm back in the reclining chair by his bedside. While I slept well last night I still feel completely flattened so I'll probably sleep today while he sleeps.

Thank you to those who are praying and have put him on prayer lists. It means the world to Jon and I.

Seriously in the Lion's Den Now

2011-03-01T21:08:00.000-08:00

I should probably update on Daniel's last PT appointments and post pictures with him and his PT and OT but this blog is taking on a different purpose now.

On Sunday, he woke up wheezing badly and just wanted to be in his crib with his mommy blankie. This raised big alarm bells for me and I badgered our doctors into seeing him that day. It was good that I did because the doctor took one look at him and called over to ER to get us in. We spent four hours in the ER at Methodist Hospital before getting ambulance transport to CHW Mercy San Juan.

We were at Mercy San Juan for about 4 hours before Daniel had a tantrum about his diaper and desaturated down to the 60's. They got him back as fast as they could and immediately called the PICU at UC Davis Medical Center to try and get him a bed. They were able to get us transferred and we got ambulance transport there at 3:30 am. I let the nurses and doctors work when we got to UC Davis and tried to sleep on the fold-out couch.

On Monday, he fought the doctors tooth and nail. He kept taking his oxygen mask off and even forcibly ripped off his oxygen cannula (and adhesive) and threw it across his crib. They did everything they could to avoid intubating him but they finally did it at 4:45 p.m. They sedated him (and also put some restraints on) to keep him from pulling stuff out. They also put an arterial line in to test for blood gases and be able to take blood without having to poke him.

Tuesday morning at 3:30 a.m., I was woken up by the x-ray people who needed me to vacate my spot so they could do an x-ray. The doctor decided at that point to put a central line in so they could give him stronger medicines and get rid of one of the IV's that was coming out. They let me stay in the room for this on the condition that I put the sterile head covering on and didn't watch them work.

Mom was with me today and Daniel did relatively well other than the last 10 minutes of her being there. I guess he had an episode early in the morning where he desaturated ("desated") quickly but they were able to mostly get him back up. When I came up after dinner (about 6 p.m.), they were bagging him and working on him. The doctors started talking to me about putting him on a heart-lung machine and I signed the consent form around 7:15. They should hopefully be done in the next hour or so and I'm not expecting problems. (I'll update once we know something.) Jon and my brother Sean are sitting with me right now so I'm not alone.

I'll be using this site to post updates because I'm at the point where I cannot talk without starting to cry. This whole thing came on like someone flipped a light switch and I'm at the end of myself.

Daniel is a fighter. He was born 11 weeks premature and came home three weeks early. As his PT and OT can testify to, he is VERY insistent on doing his own thing. He'll get through this.

**UPDATE** Daniel pulled off a coup. He got stablized and stayed that way without being put on ECMO. Praise God!

Appointment #42

2011-02-03T13:23:00.000-08:00

Daniel unfortunately went down late for his nap so he was a little grizzly bear for M and J when I took him for therapy. They tried getting him to push a toy shopping cart and J tried getting him to put toy coins into a toy piggy bank but he refused to cooperate much. The big project is working with him on walking and getting him to keep his trunk forward instead of leaning backward and goose-stepping.

In other words, same old same old.

Appointments #35 - #41

2011-01-29T11:16:00.000-08:00

I've been bad at updating this blog. I keep thinking that I will... and then I forget after physical therapy. Bad Jen!

At Christmas, Daniel was starting to pull himself up onto things. When we came back, M and J started having him practice taking steps, bracing him on a toy shopping cart. He is definitely still fast-crawling Marine corps style but he likes to pull himself up on things and his reach is now two book shelves high. Great for him, but not so much for his mom!

When I was up in San Jose last weekend, we practiced having him walk from person to person with him holding on to fingers. He'll now go for walks in his big boy shoes (thanks M for giving us your son's old shoes!) while holding on to fingers.

My mother-in-law has suggested that I start a pool on when he's going to walk for the first time by himself and sell chances. This might not be a bad idea...

Appointments #29 - #34

2010-12-30T13:54:00.000-08:00

I haven't updated in at least a month -- things have been crazy. Rather than try to remember what happened when, I'll just update as to changes.

Daniel is definitely doing better with M and J by himself -- they swing him for awhile first and he's starting to work with them after that. He's pulling himself up on things and will take some steps grudgingly with help. It's amazing to see the change in the period of a month and when I was in northern California over Christmas, I realized that I have a completely different little boy than I had when we started in June.

I've also undergone a change. I'm not feeling completely helpless any more but focusing on "OK-how-can-we-do-this" or "how-can-we-problem-solve-this-out". I'm not relying on what all the outside people are telling me and I'm starting to make decisions based on what Daniel needs and I'm starting to push him more as a result. He can deal with the challenge and the pushing -- he gets crabby about it but he can do this.

Coming in the new year is speech therapy. I need to get that set up in the next couple days.

Appoint ments #26, #27, and #28

2010-11-19T15:43:00.000-08:00

Daniel ended up puking on M during the beginning of appointment #26 so not much was accomplished.

Appointment #27 was fairly uneventful. M and J decided after this one to take more of a hands-off approach with Daniel and we were going to see how it worked out. During this appointment, they had him on a swing, played with a mirror, and with the pig where they put big coins in it.

Appointment #28 was today and M and J discovered that if they let Daniel swing a bit, he would actually engage. He needed to have the swinging or the bouncing on a ball to get all the sensory issue squared away. He engaged, sat up by himself a bit, and even sat and babbled for them which they had never seen him do. The hands-off approach is working. They also broached the possibility of having a psych eval done on Daniel but I'm a little sketchy on the usefulness of that. He's got a communication impasse as he isn't speaking yet and adding one more strange person to the mix would not be a good thing.

Progress is being made, however slowly.

Appointment #25

2010-11-11T14:57:00.000-08:00

M and J decided to see if Daniel would be different without Jon and I in the room yesterday so I waited outside and listened instead of being in the room with him. He did cry the whole time but he didn't tantrum like he normally does. They worked on feeding, having him sit and put plastic coins in a piggy bank, and on standing. According to M, he actually tried to do things. She thought that he did better because I wasn't in the room to "save" him. I don't save him -- in fact, I'm actually more strict about making him do stuff, but I think he realized that M and J weren't going to let him get away with ANYTHING.

We'll do the same thing on Friday and see how it goes.

Appointments #22, #23, and #24

2010-11-07T12:11:00.000-08:00

Last Friday, Daniel was hungry so he was hard to work with for most of physical therapy because he just wanted to scream.

On Wednesday, we got some work out of him sitting on a stool and reaching up onto a mirror to get some jelly-type stickers. He got angry after that and refused to do anything.

On Friday, I brought some Gerber Graduates Yogurt Melts and we practiced picking them up and putting them in his mouth. We also worked on tongue movements to get him to move the food around his mouth and chew it. After that, we practiced sitting and crawling to put things in a toy piggy bank with a slot.

He has definitely gotten the idea of picking up the yogurt melts to put them in his mouth and does that well except for the times when they stick to his fingers. He is also pivoting on his tummy and moving a lot more freely. Mom made the point that his 18 month old brain wants to do things that his body isn't ready to do and that seems to be on of the reasons for the frustration. He is definitely doing things on HIS time schedule but progress is being made nevertheless.

Appointment #21

2010-10-27T16:47:00.001-07:00

Daniel's physical therapist (M) had an engagement that ran overtime so it was just J (his occupational therapist) and I this afternoon. J has a different approach than M does and it complements his therapy well. I told her about the Regional Center eval and what we'd discovered about Daniel's eating and she helped me plan out some things to do. (Daniel has two problems: his mouth muscles are off from being a preemie and having the tubes and stuff down his throat and he has sensory issues because he had those tubes in his mouth at a point when he should have been developing a lot of the sensory stuff. As a result, he has sensory issues with anything put in his mouth which means that any new textures are met with great suspicion and we're having to teach him how to chew and use his tongue.)

Most of today was play and M came in for a bit at the end and the three of us talked about what was going on and how to proceed. Daniel did have tantrums but J's approach is to let him calm down and to work on getting him to engage and learn how to self-calm. It was definitely one of the good appointments. I'll have M by herself for the next two appointments and J will be back next Friday. She's asked me to bring something Daniel likes and we'll work on some mouth play.

Regional Center Evaluation

2010-10-25T16:32:00.000-07:00

The first part of the eval was the speech thing last Friday and went well. The second part was just questions for me.

the third part was OT/PT and Daniel had refused to nap today. It was so NOT good. The good news is that the evaluator saw everything she needed and could just ask me questions about the rest.

He definitely qualifies for services. Right now, it's a matter of when and what.

Appointments #19 and #20

2010-10-22T21:32:00.000-07:00

Wednesday, we started doing the Bayley test which is supposed to test Daniel's cognitive abilities. It was a bit frustrating for me because Daniel wasn't doing things I knew he could probably do because he was so irritated at having to be at physical therapy. The only good thing was that doing the testing made the time go pretty quickly.

Today, they gave Daniel a break and we just played. Again, we were having crabbiness at having to be at PT but we played with the beads on the wire and with a piggy bank that made sounds when you put big plastic coins in it. A lot of our problem is getting Daniel to engage and in addition to engaging, getting him to self-calm. I was talking to Mom today and she had an interesting insight -- part of the problem is that he probably is frustrated at not being able to communicate. We've been trying to teach him the signs for "more" and "all done" and I think if we can get those ingrained in his little brain, it might make a difference.

After PT, we went to the speech therapy evaluation. I only had an 8 oz. bottle of apple juice on me and this was a problem as Daniel had not gotten his "ba ba" during PT and he was using it as a bit of a crutch. He was crabby with the therapist trying to do stuff with him -- I think he has problems with strange people working with him. She was really nice though and even gave me her cell phone number if I had questions for her. She is definitely recommending him for speech therapy and she was also going to see if they could do a feeding assessment.

We have the developmental and social evaluations for the regional center on Monday afternoon and I'll honestly be happy when those are over. They'll be at my in-laws' house which is Daniel's turf and he may perform better there. I'm hoping so at least.

PT Appointment #17 and #18

2010-10-15T14:59:00.000-07:00

J has been a really great addition because she looks at things from a cognitive perspective on the part of Daniel. According to her, we're having to unlearn some of our behaviors. Wednesday was the first day Jon has been able to join us for awhile and it was 4 against 1 on the part of Daniel. We've started counting until we're going to change gears (example: "we're going to sit up on the count of 3. 1... 2... 3... *sits Daniel up*") We managed to hold off on giving him his bottle for 20 minutes on Wednesday and actually made it to the end of the session today without him having his bottle.

One thing that J has been drilling is that when Daniel is starting to sit up on his own or has his balance, that Jon or I need to scoot back and let him sit so he gets the practice, though be close enough to catch him if/when he falls. Daniel is really making good practice and we're starting to see which crying is manipulative vs. which crying is genuine protest or pain.

It should be interesting to see what happens this weekend when we're with family.

PT Appointment #15 and #16

2010-10-11T15:32:00.000-07:00

We're now seeing M twice a week and adding J (the occupational therapist) in. J evaluated Daniel on Wednesday at the 1:45 appointment and her assessment is that he knows more than he lets on. They tried various things playing with him which included passing Mardi Gras beads between them on Wednesday and having Daniel reach for them and crawl between the two of them.

J's thought on Daniel and his ANGER is that he gets worked up to the point where he forgets why he's angry and just protests for the sake of protesting. We talked about having a certain time during the day (my suggestion: the 1:00 hour) where we work him so he'll know that time is work time and he'll expect it. They also gave me stuff to do with him during his bath (where he'll sit on his own and play in the water).

We also managed to get the necessary stuff to the Regional Center and hopefully, we'll get an appointment for an evaluation soon.

PT Appointment #14

2010-10-02T10:38:00.000-07:00

Daniel has an ear infection but he'd had a nap so I thought he'd be a good little bear. I was sooooo wrong! He screamed the whole time and wouldn't do ANYTHING. It was pretty much a wash in terms of getting anything done so M and I just talked. She got our insurance company to agree to PT twice a week with OT added in during one of those sessions. The first PT/OT appointment will be this coming Wednesday at 1:45.

I also got a doctor referral for the Regional Center so hopefully they'll stop blowing me off. The pediatrician I saw told me that he couldn't really assess Daniel without seeing the Regional Center eval so I'm going to try and get that set up next week.

PT Appointment #13

2010-09-24T16:22:00.000-07:00

Daniel only had a 30 minute nap today (growl growl growl) and woke up in a foul mood so I wasn't thinking good thoughts about PT. He actually did pretty well for half the time and then went into grizzly bear mode. M and I are in agreement that he can be in a foul mood and spouting off... but he still has to do the work. He was in full-blown tantrum while we had him on his knees playing with the Mardi Gras beads but he was on his knees and balancing nevertheless.

He sat up like a big boy for Jon a few times this week. We think that he's not aware that Jon knows that he can sit up by himself which is a bad thing -- Daddy knows and WILL make him work.

He still isn't officially "crawling" (still in creeping mode) but he can get around quite well and quite fast. He knows the word "no" and ignores it anyway. In other words, he's a normal toddler except for the not sitting-up and not walking part.

PT Appointment #12

2010-09-17T18:17:00.000-07:00

I accidentally didn't blog about appointment #11. Oops!

Daniel was good for the first 30 minutes and got tantrum-y at that point. Mom had worked with him a lot when Daniel and I were up in San Jose this past weekend and I really think that made a difference. He *can* sit up but he has to be motivated to do it. We played with the beads on the wire tracks (you see these toys in doctors' offices) and with the inflatable ball.

M talked to the insurance about requesting more visits (maybe having him come twice a week) and getting some occupational therapy (for fine motor skills) in addition. The secretary also called the Regional Center and talked to her contact who told her that what I had been told was wrong and to contact her if I had any more problems.

PT Appointment #10

2010-09-09T11:41:00.001-07:00

I'm almost a week late blogging on this but Daniel just HATED physical therapy last week. We did various things from having him sit and play with interactive toys to letting him play in the bean box. (They have a box full of dried pinto beans with things in it that they use for occupational therapy.)

One blessing was that one of their speech therapists didn't have their patient show up so she came to play with us. She gave me some sheets on language acquisition and some tips on getting Daniel talking.

Daniel CAN sit up -- if he has something he wants. The water coming out of the bathtub faucet is something he wants. Bathtime is soooo easy! He'll sit up and lean forward to try and catch the water in his little hands.

Sigh... one day at a time.

PT Appointment # 9

2010-08-27T16:07:00.001-07:00

I was dreading the appointment because Daniel had fought me so much this week when I was trying to do PT with him this week. He did grouse a bit but saved the nuclear-level tantrum for the end of the session.

The first thing M did was massage out his thigh muscles which were really tight from him keeping them pulled up to him. She then helped him practice sitting up by rolling onto his side and pushing up with his elbows. Gee... I should have known about this sooner -- especially as it was the only way I could sit up after my cholecystectomy and my c-section.

We did practice stuff sitting up and standing up and I gave him to M because he wanted to watch another little girl so she brought him over to her side of the table so he could people-watch and also work with her.

The little bear is creeping (crawling but without the knees) everywhere -- we've had to gerry-rig some baby gates to keep him out of the kitchen and close pocket doors to keep him out of the bedroom while also allowing the cats some safe places because he stalks them.

Staying the Course

2010-08-26T16:35:00.000-07:00

The Regional Center essentially blew me off once they found out that Daniel wasn't born in California and that we just moved here. I've left them messages and they aren't returning them. I think I'm going to sic M on them and see if she can get something done.

Mom bought Daniel a toy that is working pretty well for sitting practice when we do PT. He is, however, still REALLY angry that I am making him practice sitting up like a big boy and will pitch an absolute hissy fit when we're doing PT at home. It's hard but I'm not giving him any breaks with it -- he MUST learn to sit up and hold himself up and he can actually do it IF he feels like it.

It is really maddening at times to have this 8 month delay. It's nothing we did wrong and maybe if our lives hadn't gotten so chaotic in Montana during the last 4-5 months we were there with church politics, we could have caught this relatively early. Then again, where would we have had the PT done? I don't think the local PT's would have known what to do and going down to Great Falls weekly might have been an option but a hard one in winter.

Sigh... I'm hoping he shows serious progress tomorrow and doesn't misbehave for M.

PT Appointment # 8

2010-08-21T14:22:00.000-07:00

Yesterday was just rough. Daniel was doing well and sitting up in his big boy chair and playing with toys for the first 5-10 minutes. He then realized that this was work and threw a monster tantrum. We still managed to work with him a little bit and even that bit helps, I guess. M was really great in backing me up on not letting Daniel throw his head back into me.

At the end of the session, she asked if Daniel had been evaluated by the Regional Center. Apparently, they're kind of the next level up and they might be able to qualify Daniel for some government programs to help with the developmental delays. She gave me the number to call and it's now on my Monday list. It had just been such a rough session coupled with a rough day so I ended up in tears once we hit the parking lot. I had worked hard with Daniel over the past week and I was really hoping to see some progress. M told me not to get discouraged -- these things take time and he is progressing. He's not officially crawling but he can drag himself around on his tummy (creeping) pretty quickly and is getting really good at cat-stalking.

Today, I've been working with him on his sitting and his standing during the 00:15-00:20 minutes of each hour. I figure that 5 minutes of sitting and standing practice isn't going to hurt him (though he thinks the sitting part is baby torture) and maybe it will get him used to sitting up to play with his toys instead of being on his back or tummy (though being on his tummy means that he's moving and that's not bad).

My mother-in-law and others are reminding me that he *IS* making progress and that none of this is because I'm a bad mother or made mistakes with him. It's normal for preemies to have delays and we did catch this in time to make some changes though I wish we could have seen this earlier so that we didn't have the 7-9 month delay. I'm thankful that we're in a place where we have access to this kind of help -- this will all work out and Daniel will catch up.

PT Appointment # 7

2010-08-13T16:31:00.000-07:00

Daniel has learned that if he kicks off and screams enough, we'll stop making him do whatever is annoying him. Unfortunately, M doesn't tolerate it and was helping me to reinforce that this was NOT going to happen today. It started off well -- he greeted her with smiles and they played on the swing and then on the ball. Then Mr. Grumpy replaced Mr. Smiles and things got hard. We did manage to go for 45 minutes (which is good).

I was really thankful that M was backing me up and taking Daniel when he was starting to throw himself back and head-butt me. I know now to just hold Daniel and let him scream while telling him that he's fine.

My little boy has learned to be stubborn and throw tantrums. Oh joy...

PT Appointment # 6

2010-08-06T14:35:00.000-07:00

Daniel was really angry today -- I don't know if it was because he associates PT with having to do things he doesn't want to do or if it was part of him being seriously constipated. We practiced standing up and taking things off of a raised surface and playing on the exercise ball and managed to go for 40 minutes (a new record). He liked bouncing on the ball and he liked when M and I sang to him.

M, to her credit, decided to just do range of movement stuff with Daniel's legs for the last 5 minutes in hopes that it would help with the constipation. I'm thankful because it will probably be a good thing in fixing that.

On the YAY!!! front: Daniel will sit up like a big boy in shopping carts now. It's seriously easier for me than having to heft his carseat.

PT Appointment # 5

2010-07-31T11:35:00.000-07:00

We had an afternoon appointment yesterday which worked out pretty well. Despite having had shots that morning, Daniel was in good form and even allowed M to work with him... as long as I was there. We practiced sitting on my lap and weight-bearing onto our feet to reach toys placed on a stool.

M brought out an exercise ball and bounced Daniel on it to help him practice sitting and holding himself up. He had a look on his face like "I want to smile but I can't because you're not my mommy" while she was doing it. She then practiced rolling him to me on the ball to have him practice using his legs

Definitely a better session. Hopefully, he's over his cold (which he unfortunately got from me) before next week.

Paying Off

2010-07-29T12:44:00.000-07:00

Yesterday, I was trying to do physical therapy stuff with Daniel and he was having none of it. Finally, I sat down at the coffee table with him and he started reaching for things on it. Seeing an opening, I put some toys on it for him to grab. One toy was too far away for him to grab while sitting on my legs so he reached forward, weight-beared onto his feet, shifted balance to hold himself up on the coffee table, and reached for it.

Words cannot describe my happiness that the physical therapy is paying off so well. He was rewarded with lots of hugs, clapping, and kisses.

PT Appointment # 4

2010-07-26T16:06:00.001-07:00

Sorry that this is late -- it was a bit of a crazy weekend.

Daniel was Mr. Crabby again. He was good with sitting up with very little support but he did NOT want to kneel with the roller. Nosiree... not going to do THAT.

Jon's mom acquired a plastic toolbench/table thing and filled it with water. Daniel had no problem kneeling... as long as he could splash in the water. He also sat up on my knees and splashed around in it. This might be a big asset in terms of his physical therapy.

Progress is being made -- just slower than I thought.

PT Appointment # 3

2010-07-17T16:57:00.000-07:00

We were a crabby bear yesterday morning for our PT appointment. He's in the "Mommy, Daddy, and... WHO ARE YOU?!?!?!?!?!?!?!?" stage so he wasn't happy about M holding him and correcting his position. We did more of him taking stickers off a mirror by leaning forward and weight-bearing on his feet and he got to play with Daddy on the swing as long as he held on. Lots of tears and frustration though which was hard.

This afternoon, I was on the floor playing him and he was standing up (with me holding his waist -- he was doing the pushing down to stand up) and he decided to twist and ended up stepping over my leg. I have a feeling that he'll be walking as soon as he's fully crawling.

Speaking of crawling, he ambushed Freya today on his crawl mat. She was sitting there and he snuck up behind her and grabbed the fur on her back (lightly). She puffed and walked away. I have a feeling the cats would like Daniel not to learn to crawl. :) On the other hand, Edda has learned that he'll pet her when she jumps on my lap while I'm having cuddles with him.

Bait

2010-07-12T14:55:00.000-07:00

We were outside in my in-laws' backyard. Daniel was on a spread playing "Greek athlete" (i.e. naked naked naked) and my in-laws' cat Arthur settled on the mat. Daniel set his eye for Arthur and semi-scooted/crawled to get his hands on Arthur. It was pretty funny and thankfully Arthur was a good sport and let himself be manhandled by Daniel (with some admonitions from me to Daniel to "be gentle").

We might have to use various cats as crawling bait.

PT Appointment # 2

2010-07-10T13:33:00.001-07:00

Well... we were sort of on-time for this one and remembered everything so both Jon and I were there. Daniel was a little crabby at first but realized that M had lots of cool toys for him to play with so we could work.

M was happy with the little bear's progress on sitting up -- he sat for 30 seconds by himself on Thursday afternoon (I counted) and his core muscles are definitely getting stronger. She affirmed his desire to weight-bear and stand up when sitting on my leg and we played with stickers on a mirror, having him reach for them by standing up.

We're trying to strengthen his legs so when he's on his tummy, we're giving resistance to him flattening his knees and instead having him be on them. We also had him kneeling with the help of a roller thing. I think we'll re-create that exercise with a file box at home.

Definitely a better appointment, even if both Jon and I were exhausted for it.

Soon To Be Standing?

2010-07-08T12:31:00.001-07:00

When Daniel and I practice sitting on my leg, he tries to stand up with me holding his waist. This is cool because he's advancing pretty fast. I'll talk to M on Friday about ways to get him to balance on me without me holding him up -- he needs to start being able to hold himself up.

He may not be crawling yet but he is still finding ways to get around and to get into things. We're working on Daniel-proofing the apartment right now and I'm considering a baby gate to keep him out of the kitchen/litter box area.

Cuteness

2010-07-07T16:45:00.000-07:00

I've been doing the sitting-up exercises with Daniel and every time I praise him, he claps. I think he's picked up on clapping meaning that he's doing something right? :)

He and I play clapping games when we're home together (i.e. when Jon is out of the house) and he is definitely catching on. His physical therapist estimates his development at 6-7 months (not because of anything we did -- preemies have delays) and the clapping seems to be at that level.

PT Appointment # 1

2010-07-02T10:09:00.000-07:00

Daniel's appointment was at 7:30 this morning and we were about 10 minutes late. (Note to self: plan for all the red lights on Garey and Foothill.)

We worked with M (the physical therapist) for about 35 minutes. Daniel was a grumpy bear -- probably because he didn't really know M and he also probably thought he was going to get a shot. Instead, we played with toys on the mats and she showed me the things she wanted me to do with him.

-Practice sitting up with his legs in a ring (almost Indian-style) with me giving him a little bit of support at the hips.

-Practice transitioning from sitting to crawling by helping him bend his legs to the side and move to the floor.

-Have his legs up (or under him) when he's on his tummy to get him used to having that power to crawl.

M explained that NICU babies generally have really strong upper back muscles because they're on their backs so much and the stomach muscles don't really get developed. That would definitely fit Daniel.

While he was being grumpy, she gave him some toys to play with to take his mind off the stuff we were doing with him. She also showed us a teething toy that vibrates when you bite it so that babies don't get in the habit of grinding their teeth.

We'll work on these things this week and hopefully I'll have some progress to report.

Foods for Chewing

2010-06-29T13:18:00.000-07:00

What did you use to help your kids learn to chew?

In The Lions' Den Again!

2010-06-26T14:20:00.001-07:00

Daniel has beaten a whole lot of odds. He was 11 weeks early and came home after only 2 months in the NICU. He only had to have a little bit of out-patient surgery to fix a hernia instead of eye surgery or heart surgery.

But...

He's 14 months old and not sitting up yet, not crawling yet, and is needing some definite help with those gross motor skills which he's manifesting at a 5 month-old level. With some help from our doctor and the recommendation of a friend of the family, we've got him into physical therapy which will start next week.

This blog is designed to update people on how PT is going as well as how Daniel is doing if I can discipline myself to continue it after he is done.