An update . . . .

A long overdue update! things have been quite busy since the school year started. I have had much to keep me too busy including 2 positions on 2 of the 4 PTA's I belong to! In August, things changed as I now had a 6th grader in my house! I was spoiled as Stephen made lunches in the morning and I could count on him to keep the other two from fighting (well at least sometimes!). The new Jr higher has been doing very well! He went into Accelerated math and he has percussion in band. Despite not having much music experience, he is doing well! He played baseball over the summer and was a starting pitcher, and played football in the fall. He did well in that as well. He is a great athlete and is good in school too, very well rounded kid and I'm very proud of him! He's had almost all A's for the past 3 quarters, so a great start in Jr. High. He has also made the rank tenderfoot in Boy Scouts (he crossed over just a year ago March 2010) and is working on his 2nd class rank (possibly advancing late summer if he works hard). He is tall as I am now and I can no longer buy his shoes in the kids department! This summer he most likely will have braces put on. Ryan has been having a great year. He has a great teacher this year and I recently had his IEP eval. They were having trouble figuring out what to put as goals for the next year because he is doing so well. He has not displayed any aggressive behavior and his noise making in class has greatly decreased. He has been more attentive and focused and doesn't hate school as much as in previous years! In his latest report card, he got all A's for grades and for Effort alot of O's (O's are for outstanding effort!) Last summer we had him evaluated for PT. He has some pronation issues as well as some low tone issues in his shoulders and back. He's been doing phsical therapy since January and is wearing some shoe inserts. This is hopefully a short term thing with the therapy. He is doing much better with his "slouchiness" and has more strength everywhere overall. He is still taking straterra for his ADD. It has helped somewhat but we know he may do better on another drug, yet we have decided to stay on the stratterra as we are afraid if we try a different medication (a stimulant) that he will have even more of a hard time gaining weight. He may have even less body fat than Trevor at this point!! He continues to show his creative side with all the things he builds, all the things he draws. And, he out of the 3 of them, shows so much interest in the cats and all living things - he loves bugs, reptiles, and has had lots of things in his little terrarium this year. cuddles follows him around and they are best buds! Ryan had 6 teeth pulled over the summer of 2010 - preparation for braces! He took it like a champ! He did a lot of swimming over the summer and I'm sure we will do a lot of time at the pool this year when summer gets here. Last year was a big year spiritually for Ryan as he made his 1st Holy Communion. He looked so grown up. It was a great day, yet family drama affected some of the celebration. Trevor is doing so well at the preschool. His speech path says he is ready (has been ready) to be discharged from speech, but we may finish out the year. He is quite a talker. It is hard to believe he had been speech delayed! We are workign on fine motor skills right now. He seems a little behind in that area. He doesn't have good control on his hands when holding a pen/marker/pencil/scissors. I try to work on that with him at home but he usually has to be bribed to do anything with a writing instrument! Trevor has put on enough weight that at our meeting iwth our endocrinologist will not be for a whole year. Trevor has been eating a bit better, but it is still a great struggle to get him to eat anything besides pasta and sweets. He had his first cavity this past year. We had stopped supplementing his juice and he seems to be doing well. He hasn't had any major illnesses - he in fact went through the flu the best out of everyone in the family when we got it this year (note to self, get the darned flu shots next year!!). At a check up with the eye doctor, his one eye is turning in more than the other, so we now patch his good eye in hopes of making the other eye stronger. I am a bit worried about his eye, so I am anxious about his upcoming apt in April. As for me, well, last year was a very difficult year for me on so many levels. One of the reasons I was not blogging. Sickness, family drama, lots of unexpected financial things that led to a lot of stress and a host of other things took its toll on me physically, emotionally and phychologically. I am hoping this year will be a bit better, but only time will tell. I try to keep busy as that will at least give me something to focus on. I am the treasurer at the preschool, and I am the Recording secratrary at the Special Needs PTA. I have made some great friends from the special Needs PTA and at the preschool and that has been a blessing as some of the friends I've had for years just haven't been around much to confide in, joke around with, go out with and all that. So now I am trying to build new friendships. I've been so busy at the preschool and Special Needs PTA that I've had to cut back my Tupperware time. With Stephen's sports, scout activities, social stuff and Ryan's therapy and Religous Ed and Cub Scouts I am in the car alot and when I add that to all the meetings I have for my PTA stuff, I don't have as much time to devote to Tupperware. I still had a decent year, but just didn't make what I wanted to make and didn't have as many parties as I would have liked. I really enjoyed being at Stephen's games, trying to make his performances for band and helping out in Trevor's preschool class, so it is all good. This year Mike and I celebrated our 15 wedding anniversary. Hard to believe its been that long (makes me feel very old!). It also means lindy and gracie are now 15 years old. Lindy has lost her hearing and we just found out they both have early stages of kidney disease, so they are on a special diet. I guess we are all getting old, despite me being in denial about it! So, that is my update.

2010 - reflecting on the past year and looking ahead

Happy New Year.

Bloggin's not been a priority lately. Juggling everyday stuff has gotten in the way of that (that and facebook).

Happy New Year. I am hoping to have a HEALTHY NEW YEAR. (So far not off to a great start on that one!) (This latest cold has been around since before Christmas and doesn't seem to want to leave me!)

2010 will sure be something! It is a big birthday for me (I'm debating on whether I want to celebrate it or just pretend it doesn't exist!)

Ryan will make his first Communion this year, so we will be having a big party!

This year as it starts out, I almost feel like a normal mom - to normal kids. For those of you who don't have special needs kids, just realize how blessed you are. I am truly blessed for the kids that I have, but being the mom of special needs kids sometimes makes me feel so defeated and without much support or empathy. While I am lucky that the issues we deal with here are workable, and we could be so much worse off, at times I do wonder about my sanity. Lately though I have started to feel more normal. The past couple of months, i have caught glimpes at "normalcy". It is an odd place to be at. Trevor no longer has Speech paths, OT's, nutritionists coming weekly - no more constant Dr. visits. He just gets speech once a week at the pre school. Ryan is no longer getting notes from school daily and we no longer have daily melt downs anymore. I have come to a point that at times I feel like I have normal everyday life and deal with every day mom issues from typcial children. On days that seem everything is pretty normal I think how great life is. Ryan is doing so well on his medication. He has a teacher that is so much more suited for a child with his issues. Trevor is making small gains in his wieght, and seems to be doing ok at pre-school. Speech, well not sure what to think of his speech - I guess its coming along. He still is off as far as his crying jags that go on for up to 40 mins after naptime and he still has sleeping issues and being overly sensative to EVERYTHING especially when he is sick, but I am having periods of time where I almost forget that he has sensory issues, or speech delays or Failure to Thrive issues. He is a very stubborn little boy. He is a very mischevious boy by nature. He is very smart and wants things his own way. He wants to be involved in EVERYTHING and wants to constantly be talking and asking questions. I do believe that out of all three of the boys, he is the one who requires the most energy to keep up with and to keep out of trouble (he is way to smart for his own good). He is a momma's boy and wants to always be with me or with Ryan. Ryan and Trevor seem to really know how to press each other's buttons. When they play together nicely, it is wonderful and makes me smile ear to ear - but most of the time Trevor just isn't a very reasonable sharer/player and then it makes Ryan get angry - then there are lots of yelling, and tears, sigh. The good side is that Stephen and Ryan play nicely together ALLOT. They seem to have teamed up together to not let Trevor in. Trevor does have a tendency to bust up any lego buildings they have put together, deletes pictures on their cameras, turns their gameboys on and runs the charge down and has been known to rip up masterpieces they have made. Trevor really is a force to be reckoned with! I'm at my witt's end a lot of the time trying to keep him from destroying the house and protecting my stuff and the boys stuff from him. 2 1/2 hours of pre school 3 days a week isn't much time away from home, so Trevor is home a lot missing his brothers so he is off to try all their things while they are away!

Trevor is my walking tornado. Ryan has become my quiet creative child - still prone to getting overly upset at small things. Stephen is my bright, shy, sensitive one with lots of friends who keeps allot of stuff to himself. I think they are rather "typical" and feel very blessed that when I think of my kids right now I think of sensitive and bright, creative and quiet and a walking tornado - no longer the first things that come to mind are "failure to thrive", speech delayed, ADD, developmentally delayed. It is nice to have come to a place where we do have some "normalcy" in this family. their issues don't seem so life threatening. Their futures don't seem so unpredictable and possibly a struggle to get through.

We went to Mike's aunt for a holiday get together and she couldn't believe how quiet and well mannered Ryan was. My mom said the same thing. It's been almost a year since Ryan was diagnosed with ADD (even though we knew that was most likely what we were dealing with) and he is doing wonderful. He is one of the best behaved kids in his Cub Scouts Den. Academically he is doing all right. He has definitely become a more serious boy and he is more thoughtful and he is not as impulsive as he had been.

Trevor is no longer getting tons of service from Early Intervention and I think that he really missed all that attention. He definitely goes out of his way to misbehave at times. He does get bored easily and is constantly wanting to clean and do whatever it is that the rest of the family is doing. I no longer fixate on everything he does or doesn't put in his mouth. His hair is growing, he looks healthy. I did get really overly anxious about the latest H1N1 scare. And for a period of time I was obsessed with the thought of him getting the flu. We did get a priority vaccine for him and the rest of the family was vaccinated too. We have been rather sickly November and December, but no flu and no strep throat which has been invading our school and our friends have been hit by them.

so for 2010 I feel very lucky where we are at when I look back at where we were just a year ago. We do have upcoming visit with the endocrinologist in March as well as Trevor's opthamologist in March too. We probably won't be going back to see the new Gastroenterologist we saw in December. He recommended a consult with an OT, and a nutritionist. While I'm sure we could benefit from their expertise, we cannot afford their astronomical fees - over 400 for a 2 hour eval from the OT and then ongoing treatment is guesstimated to be at over 300 each session. His health situation is no longer as bad as it had been and I have learned allot from our time with our nutritionist from Early intervention, and had learned from our OT from Early intervention that I feel okay about not pursuing these therapies anymore. I wonder who can afford this kind of therapy. And don't even get me started on the lousy insurance companies and how terrible it is that speech therapy is not covered, nutritionist consultation is not covered for Failure to thrive patients, SPD (Sensory processing disorder) therapy is not covered. Nor is our visits to the phychologist at the ADD clinic that we will have some office visits.

I still am struggling with my health. Still very sleep deprived, still don't know what caused my heart irregularities, still having trouble maintaining my weight, and chronic and excessive fatigue. Maybe this year I will get some answers on myself. The thought has crossed my mind that the stress I had been under last year might be a big factor in my health. Dealing with my dad's death, Ryan's ADD diagnosis and fighting with the school for him to be treated right, Trevor turning 3 and aging out of Early Intervention and still not gaining the weight he should and still speech delayed - those things can all make a person a bit anxious to say the least.

As this new year starts out, I am feeling optimistic about it. I hope to lose some weight and get healthy, get my house organized, and keep helping my kids reach their potential and deal with their issues and struggles. I do have a lot on my plate. I don't know what I was thinking when I decided I wanted to co-chair the Sweetheart dance at Trevor's pre-school, among other things I added to my already big list of things on my to do list. but that's what most of us who are mom's do. One of the things on my "to do list" - get Trevor potty trained, get Trevor to sleep in a big boy bed, and clean out my basement. Just a couple of things!

I hope 2010 is going to be a great year filled with lots of great memories for my family and for yours.

HAPPY 2010 to you! May you have great health, great joy, and great prsperity in this new year!

Trevor sings, and Am I going to Hell??

Another Trevor post!

Me, Ryan and Trevor were on our way back after dropping Stephen and friends to tennis practice. I have the music on (101.9 I believe). It's a song I recognize and has a great beat so I am kinda humming and tapping my feet and doing my "car dancing" to the music. (and no I was not paying attention to the lyrics, . . . .yet)

Then Trevor chimes in. He is singing the lyrics! And, its not quite as slow paced as Twinkle Twinkle little star either! He is singing and he is singing clearly - my little speech delayed son!

Are you wondering yet what song he is singing? Brace yourself . . . .
I hope I am not going to hell for not censoring my music and also for not turning the station once I realized what the lyrics were, but he was sining and it does have a great beat.

http://www.youtube.com/watch?v=kju9VU2B7Bk

Just in case the link above doesn't work . . . . . . . . . . . . .
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The song was by All American Rejects - if it gives you hell

this is the chorus part that Trevor sang:

When you see my faceI hope it gives you hell,
I hope it gives you hell
When you walk my wayI hope it gives you hell, I hope it gives you hell

So, am I wrong to be happy and proud about Trevor singing a pop song, Or am I going to HELL??

Trevor's Eye appointment

Why am I ever surpised when a doctor or teacher or someone suggests I need to take my son to a specialist or have him seen for this or that, and then am still surprised when they ACTUALLY find something wrong with them??

Sigh, I don't know why i continue to be surprised, but I am. since Trevor failed the vision and hearing - oops, I mean was referred for vision and hearing, I had to go have him checked out for vision and hearing. We have yet to do the hearing, but we did go and see an Eye Dr. yesterday for Trevor and his eye that turns in or as they stated "left eye deviates in" on his referreal form.

Ryan also had what seemed to be an eye that turned in and we took him to the eye Dr. and was told that although it looks like his eye turns in, it actually isn't. There is a fold of skin that makes it appear his eye is turning in, but in fact his eye is fine. I wasn't so sure about this, but its been a couple of years and I don't notice it anymore. So I guess because of this, I expected to hear the same thing at the eye Dr.

Long story short there was good news and bad news. Good news - no surgery. Bad News - he will need glasses. He has a condition called Strabismus. It is a visual defect where the eyes are misaligned. About 4% of all children have this. for the exact kind of Strabismus, I think he said esotropia.(not exotropia) Trevor is faresighted and will be wearing glasses all the time.

Strabisums is common for kids with disorders such a s cerebral palsy, down syndrome, hydrocephalus and brain tumors, but I guess it is still common enough in kids without those issues either. As for long term, I'm not really sure what it means. i was in a state of shock and not doing my best at listening, but I thought he said there is a chance he may outgrow this. I was not listeing because I had several thoughts running through my head

1. What do you mean he is far sighted? Mike and I are both nearsighted!

2. I can't believe there is yet another thing to add to the list of "issues" this little guy has

3. Becasue of his sensory issues, he hates having hats and gloves and stuff on him, wonder how he will do with glasses (he wouldn't wear the little plastic sunglasses thing home to make his eyes deal wtiht the sun on the way home after his eyes were dilated during the appt.

4. How much is this latest thing going to cost me!

So, I am a terrible mom, aren't eye! (get it eye and not I!!)

It's day 3 of summer break, and I am making phone calles trying to find a place that sells frames for toddlers. Its harder than i thought to find glasses that small (and they aren't cheap at least not ones in stock)

So after I wait for some eye places to call me back, I will be trying to hunt down the hearing evaluation that was done last summer on Trevor. He did pass it last summer (although I was shocked that the girl passed him - its not that I think he can't hear, it was the fact that he was totally not paying attention and responding to most of the things the way he was supposed to)

Trevor gets evaluated at the Pre-school

Today was the big day . . .

Trevor had his evaluation at Prairie PreSchool . . . .

I'm so glad its over . . . .

Now I wait till the Evaluation MEETING in two weeks where I will here what all is in their reports, and what all they will recommend for services.

On one hand, I was a little bit embarrassed and a bit sad that Trevor was not being the sweet fun little boy that he can be. On the other hand, it did highlight some of the bad behaviors I worry about and hopefully showed some of his weaknesses (as well as strengths).

Within being there 10 mins, Trevor failed the hearing test, then failed the vision test- WHAT??? (In my mind it just means more Dr visits, as you can see I am not too worried about his hearing or vision. Maybe he has an ear wax build up or something. his sight, well he does look cross eyed in one eye, and hopefully it is just an extra flap of skin that will be fine in time like I was told with Ryan.)

Onto the evaluation . . . The Psychologist, OT, Speech, Social Worker and School Nurse were all present for the eval. Right off the bat Trevor was getting agitated and didn't want to separate from me. He was coaxed away with toys and for a time seemed to be following their commands. He must have gotten bored or frustrated because he started melting down a bit. However, he did recover pretty quickly most times. I'm not sure if he showed any Sensory Issues, and I'm sure he did fine on Fine and Gross Motor Skills for his age. There won't be much the Nurse/School would do for his Failure to Thrive diagnosis. And speech, I know he will receive services, but am not sure if he will get inclusive service (meaning during pre-school) or if it will be outside the classroom before or after pre-school.

I was hoping he would be more compliant with the things they wanted him to do. He seemed pretty ornery, stubborn and just being tantrummy (is that a word?). I know its good for them to see him at his worst as it will show his weaknesses, but me as mom still wants others to like her kid. I still want them to say "oh what a sweet boy", and tell me what a smart boy he is and all that. He can be very social and engaging with strangers at times, but then other times and he is deathly afraid and gets very stressed about it.

I gave them the forms I filled out and reiterated my concerns and talked about him while the eval was going on. I tell them he is very smart, very affectionate with family, but terribly stubborn, very independent (most of the time), full of energy, easily frustrated, doesn't share or take turns easily. his expressive speech is lacking, talked about his getting over stimulated or other sensory issues and his problems with interactions with other kids (not sharing, not taking turns) - that those items were my concerns for him right now (as well as his lack of weight gain, but that isn't really a school issue)

All in all, I think he did ok. i guess if he had been super sweet and super funny and eagerly doing all they ask of him, and showing how much he knows instead of being stubborn and refusing to do things and melting down a bit here and there (and running to mommy) then they may not get a completely accurate picture and may recommend less therapy and intervention than is needed.

I have no idea if he will qualify for free tuition, I don't think his speech delay will be enough for that and as I stated I don't know if they will look at his Sensory piece that closely - they may chalk alot of behavioral things up to bad parenting or terrible twos for all I know. He didn't pull at his socks, or pull on his shirt tags, or insist on keeping his jacket on, pulling his hair, or covering his ears from a loud noise, so he didn't really demonstrate any Sensory Processing problems that we deal with but hopefully they will look at his OT's report and see what she has to say.

Last week the nutritionist was here and weighed and measured Trevor. He lost 1/2 a pound and did not grow in height at all, so it was a bit disappointing, but he had such a great growth spurt the month before that so I try not to get too worked up about his numbers for this month. He had been sick right before his last weight check and sometimes we will see it reflected in his lack of weight gain one or two weigh-ins later .

Now the 2 week wait begins (in the mean time I need to get him up to date on vaccines, see an eye doctor and get his hearing tested again)

Super Nanny, are you available?

Terrible Twos Tuesday -

Doesn't Trevor look so sweet and inncoent?

I have to say that Trevor hasn't been getting into quite as much mischief such as getting touch up car paint all over, or emptying full bottles of Windex in minutes, HOWEVER, he is now quite demanding and whiney as of late- trying to get his way. Whenever I tell him its naptime he screams "EAT, EAT, EAT" - I know he is trying to delay naptime, and he is smart, he uses "Eat" "eat" as he knows mommy loves to feed him (my failure to thrive baby).

The terrible twos are realy testing me lately. He can be manipulative (like using the EAT, EAT, EAT as he knows I love getting food in him)-and when I am on the phone; boy he sure knows he can pester me for a cookie and I will give in). He also has the memory of an elephant - wakes up from his nap demanding whatever I bribed him with to get him down (such as going outside or watching Barney). And he definitely knows his mind and is stubborn (gee, I wonder where he got that from). But he is a funny and sweet little boy and is very affectionate (ok, I'm gonna claim being responsible for those traits too!) You should see him with his baby alive doll. Super cute! I can't wait to see what this little guy will grow up to be.

I admit, I haven't been doing my best parenting lately, so I have been contributing to the perpetuation of the "terrible twos". I know I've been giving in too much as I've got lots of stuff going on and I am just not tolerating the incessant whining, constant fighting with ryan and the colicky crying episodes that go on for an hour or two at times (almost daily after a nap and sometimes after dinner). Its hard to know what to do as sometimes I wonder if what is bothering him is a sensory issue, and if he is sick (which he is alot), I know he is not feeling his best and wont act his best. And, I always wonder if maybe he is just super hungry, or maybe he is feeling some pain from reflux, or maybe he is just off because he doesn't nap long enough. And, I know it must be frustrating when he tries so hard to communicate and I still can't understand him (because of his speech delay). So, I think because it might be something that is really upsetting him or painful, I tend to go easy on him. Lately though I've been thinking he is just used to getting his way and I need to be more consistent with time outs and such. You'd think by my third one I'd have things more figured out by now, but I don't!

I need super nanny to come over, help me sort through this and get a better game plan!

another monday . . . (and a small update on Trevor)

Another Monday.

Actually, Monday's aren't so bad . . .

Once its 8:40, its time to drop off the older 2 - which is great as Trevor and Ryan are constantly pushing each other's buttons, and fight over toys, etc. I know Trevor likes Mondays as he sees one of his favorite people, Virginia - Trevor gets speech therapy on Mondays, so its like a built in play date.

another bright spot of monday is one of my favorite shows (ever) is on tonight !- dancing with the stars! - see Mondays aren't so bad!!

How is Your Monday going?

I'm happy that we finally have Trevor's pre-school assessment eval on the calender. With his July birthday, I was not sure when they would get to his evaluation. I've been anxious to get this under way and have an idea of what kind of assistance he will get at the pre-school. A school phsychologist, Social Worker, Speech Therapist, OT and the school nurse will all be there to evaluate him.

I'm really happy with the progress he is making in his speech. He is really talking a lot more and each day is sounding better and better.

He continues to eat well and I'm sure being outside is helping his Vitamin D levels. We need to get some shots as he needs a lot before school starts, but we don't have an endo appts or Gastro appts anytime soon. An apple (and lots of choc milk and supplements) a day keeps the doctor away!!

Now, I must get back to work! I am busily preparing for my Open house - Tupperware Open house. I have tons of items in my inventory that I need to get rid of. if you need tupperware let me know (or come to my open house this Friday and Sat if you are local in the Aurora area).

HAPPY MONDAY!

We are on the charts (Weight and height)

LOOK WHO's ON THE CHART!

We hit the chart! NO not the music charts. We aren’t musically inclined, we don’t have any new CD’s coming out. I’m talking the growth charts baby!! So although I have been super busy and so much is going on that I need to blog about, I just got to blog about this happy, happy event!!!
My favorite thing to blog about seems to be Trevor. He is my baby after all, and he does have his challenges with his Failure to Thrive, his speech delay his sensory issues, and all things being 2!

Friday was CRAZY BUSY! To start the day, we had an appointment with the endocrinologist. I didn’t have anxiety and worry over this appointment as a lot of appointments I do. After his last weight check with the nutritionist, I was feeling good about my little Trev.
It was a great meeting. She looked at him and said he looked healthy (his skin color looks good, he has some body fat on him, etc. ) Plus, she noticed his hair! It is growing (finally)!. He hasn’t had a hair cut in over a year and he only had a slight trim back when he was 19 months old.
Trevor weighed 24.6 lbs (that is with clothes on, but still even subtracting clothes, it’s a great weight!) He is now ON THE CHART at almost the 3rd percentile for weight! WOOH WOOH!! This is up from under 1 percentile in December!! For height, he is close to 15 percentile for height, which we’ve seen him climbing slowly, but steadily for several months.
I was so excited to have it confirmed that he really is growing. Not just the Ped, or the Gastroenterologist or the Pediatrician, but all of them have had appts with us in the past 1 ½ motnhs and even with having the flu, he has been doing well! The nutrionist does weigh him every 2 weeks and will measure height once a month, so I knew about how much he would be weight wise and height wise, but out of all the Dr.’s, having the endocrinologist tell me how good he is oidng seems to make it more real. This appointment made me so happy because he was sick in February with a cold and also the flu and he did have 3 ear infections from early Dec - Feb, so for him to maintain and even gain was wonderful.
I have been feeling good as the past couple of weeks his appetite has been ferocious! We did up his cyproheptadine to 2 times a day (half tsp) a few weeks ago, and are keeping up with his polyvisol with iron and his Cal-Ma Zinc liquid supplement . But I have stopped adding the proteinex in his juice.We will see the Dr in 6 months, and before we go for the visit, we will have another bone age scan done as well as blood work. Dr. tells me that since he is gaining and growing, there is no need to repeat the bloodwork at this time (being that his prealbium and Vitamin D was low and his phosphorus had been high back during his last bloodwork done in Dec). I am assuming that his growth hormone level is in the normal range now as well.I drove home with tears falling down my face. They were happy tears. Some days are just so hard, but then a day like this with a Dr. appointment like this makes everything seem like everything is good in the world!

The latest on Trevor - Trevor's gaining some weight!

I acutally have written stuff for my blog a bit here and there, but you wouldn't know it from my blog. The couple of times I actually do start writing a post for the blog, I get interupted and never end up posting it. So, are you still intersted in what I had to say back in Feb and early March?? I had been (have been) busy getting ready for the children's resale, then taxes, busier with my tupperware business and now filling my freezer before my trip to Arkansas and getting Ryan's birthday party planned. So much is going on I wonder when things will ever slow down. I'm thankful that things for the most part are going well with the kids ( and having 2 special needs kids, this is saying a lot!)

A post for the blog that I wrote back in med February when Trevor was getting over a virus (it was posted to several of my facebook friends, so for some of you, you may have already read the top part) I added an update at the bottom.

An update on Trevor:
Many of you know that I’ve my hands full with Trevor ( my failure to Thrive baby) lately. It seems we’ve had quite a few Dr. appointments since October and I’m not sure how long ago I’ve updated my friends and family, so here’s an update!
We just had another visit from the nutritionist on Monday. We are supposed to see her 2 times a month, but we had not seen her in a month because of some kind of paperwork issue.
Trevor had been sick last week with the flu and has not been eating well at all since weeks before that. And, he has been having some texture issues again since around Christmas. So, I was not expecting much of a weight gain. He did gain 2 oz – he is now 22 lbs 14 oz (at 30 months). The brighter side of things is that he grew 1 ½ cms and the nutritionist said that 1 cm is average for a month. So he has steadily been going up height percentile. He started out at around 3% percentile a year ago, and has steadily gone up to where he is now at just over 15 percentile in height. This is good and bad. Good that he is growing taller, yah! But of course it makes the weight to height ratio worse as his weight is still under 3rd percentile for weight. The good news is he is almost on the chart for weight. I was so happy last month to learn that his body fat has come up. When the nutritionist first evaluated him for Early Intervention almost a year ago, he had only about 5% body fat. In January he did the yearly Eval for early intervention and measured him again and his body fat again is at 20%. That is awesome! I am so, so happy about this. Even though we aren’t seeing a lot of weight gain, he is doing better!

The test for CF (cystic fybrosis) was done last month and he does not have that. I haven’t talked to the Gastroenterologist yet (apt next week) but my Peds office called and said the Fecal Fat Quantification test came back fine. (This test the doctor ordered to make sure he is absorbing nutrients from what he eats and that it is not just passing through him). We’ve done most of the tests that the drs suggested and no obvious reasons have been found yet for his lack of growth and weight gain. (We’ve done a bone age scan, celiac test, allergy test, HGH test in which he was slightly low in the Human Growth hormone test and lots of bloodwork done) (Which reminds me, I need to ask my doctor about his Growth hormone stim test and see if they are planning to re-check that as he was under the accepted level for that).
We will see the endocrinologist in March and I’m guessing she may want more bloodwork to see where his phosphorus levels are at (the leverls were high at last blood test) as well as his Vitamin D (it was low) and prealbum levels (those were low too) When we saw the Dr. back in October, she basically told us he was malnourished based on his bloodwork.

We’ve been working hard to get him to eat more protein and are supplementing his juice with liquid protein and adding more Vitamin D and Calcium Mag supplements, which does seem to be helping. But, he is getting real picky again and having texture issues and spitting out food that aren’t smooth. Our nutritionist is thinking he be having some reflux issues again as we’ve been off his reflux medicine since September and maybe we should put him back on Prevacid, so I’ll be talking to the gastroenterologist about that.

Since I wrote the above post, Trevor has been steadily eating better. He hasn't been sick since this post back mid february. He is eating much better now, guzzling his chocolate soy milk (with oil) and is not spitting out the foods as much as he had been. Our gastroenterologist dr. upped his dose on the cyproheptatine ( appetite stimulatant)to take it 2 times a day. We continue to give himt he polyvisol and CAl MAg supplements every day. I am so happy to say his hair is growing, so that along with his height is a good thing. The last weight check he was 23 lbs 4 oz and i was excited to see him over 23 lbs. He had gained 10 oz in 3 weeks. Our nutrionist says 8 oz for a month is what would be expected, so he is doing good right now. I just hope I can keep him healty for a bit! We will see the endocrinologist this coming week so stay tuned!

It's Potty Time! "One upon a potty, potty"

It's time to "potty".
Yesterday Trevor patted his diaper and said "potty". Off to the potty we go. I take off his dipaer (before I realized he had some business in there!) and I cleaned him up a bit and sat him on the potty. After a minute, I asked if he was done andhe said yes (he hadn't done anything yet). I took him off and continued to clean him up and as I was finishing wiping, he whizzed on the floor a bit and said potty. So I sit him on the potty again and cleaned it up, but he was all done.
I'm proud that he initiated going potty and he knows the connection to sitting on the potty. Woo hoo for Trevor!!

Not bad for his first potty experience, right? He again this morning said Potty and headed toward the bathroom, trying to take off his pajamas on the way. Now i need to go downstairs and find the little potty seat. And I need to break out the "Once upon a potty, potty" tape! Maybe we will play with his baby boy, "baby alive" doll (it is anatomically correct and pees!).

My little baby is not so much a baby anymore! Of course now that I am easing into potty training, the thought of the Fecal Fat collection runs through my mind. We have to re-do the collection of Bm's for 3 days since the lab would not except the "deposits" because they were not in there own containers (ridiculous says my doctor!).

Now I can't get that darn potty song out of my head!

Terrible Two's Teusday - Trevor and the kitty litter and the carbon monoxide detector

Terrible Twos Teusday

While the "terrible twos" are not always so terrible; they are alwasy interesting. I know some toddlers get a bad rap with the verbage of terrible twos, but mine is again going through some "terrible two" edness.

Just a few days ago my little terrible two year old saw his opportunity to live up to the terrible twos definition.





Friends had come to the door looking for Stephen to come out and play. After he talked to them at the door, he decided to go out and play and ran upstairs to change. Ryan shut the door, BUT DID NOT LOCK IT. Trevor being Trevor noticed this. He went to the other door and got his boots and put them on. Then went back to the front door and out he went. Its about 10 below zero and he is outside in his boots. We realized he opened the door and went out within seconds of him getting outside, but none of us had any shoes on so we called to him to get back in and reminded him how cold it was outside. So guess what happens next. He backs further away and smiles at us. Then mean mommy me tells him to GET INSIDE NOW in my angriest voice and even with that he still stood there coontemplating whether he would obey or not.



right now I think he may be opeing up candy on the island. He whizzes around on the kitchen chairs and anything on the countertops, stove, or island is fair game to him as its in his reach. Excuse me a moment while I try to curb the massive sugar intake . . . . .











Ok, sugar consumption crisis taken care of . . . . . (and just so you know, I had the candy out as a bribe to get him to take his medicine. How low I've stooped as a mom!)



I do like the things toddlers say at this age. They are very interesting conversationalists!



I will never forget being in Factory Card outlet when Ryan was about this age. He was REALLY, REALLY into Thomas and all the Thomas trains! We were in line waiting to check out. There was quite a line in front of and in back of, which made what he said (or should I say shouted - or so it seemed to me) all the more embarrassing. Now I don't mean to be vulger, crass or offensive, but he clearly said PUSSY! And then he said it a couple of more times. Now I knew right away he meant "Percy", but that is not how he pronounced it. (Maybe people who come up with characters for kids TV cartoons should reflect on this). So I, a little more loudly than normal, said "Oh yes, I see you are looking at PERCY" and then ever so slowly looked around to see if anyone was still staring!



another one of those embarrrasing times was when we were in Meijer passing the "intimate apparal" section. Ryan said very loudly (his normal voice is very loud!) "Look mom - booby holders!"


Now I am going through that stage with Trevor. He doesn't have a ton of words yet, but I can tell already I am going to have many embarrasing moments ahead if I should ever go out in public with him!


We were trying to get him to say YES. He can say yah, but doesnt' pronounce the S, so we've been doing lots of S sounds and keep saying YES! Can you guess what he turned the yah into? SHET (sounding like SH@T with an I!)



I forgot about Sunday's Terrible Two moment. I went to take a shower. The kids were off school and so i had waited to take my shower as we lounged around in our PJ's. i went to shower and told Stephen to keep an eye on Trevor. So, of course you know he didn't. After I got out of the shower and was dressing I could hear the distinctive sound of the kitty litter being scooped. So I knew once again that Trevor had scooped and tossed lots of kitty litter (hopefully not the kitty turds) all around the hallway. Stephen was downstairs so engrossed in some cartoon or something that a burgler could have broken in and never been seen or heard.

And, of course we had a Terrible Twos moment yesteday as well. Again I went for a shower (I got to stop doing that!) and Trevor knows this is his chance to wreak havoc on the house. I come out of the shower and hear the carbon monoxide detector going off. It was plugged in and working. Treovr had sprayed hair spray (tons of hair spray) in the hallway causing it to go off. I don't know why, but Febreeze or other cleaners sprayed (even non aerosol) make the detector go off. Again after a few minutes my other two finally come up the stairs to see what all the noise is about.



Today he also decided to "wash the baggie of scrambled eggs I had out on the counter (was to be my breakfast but thats what I get for trying to start a load of laundry and leaving food out - I'm so good at telling the boys don't leave anything out that you don't wnat trevor to touch, but apparantly I forget sometimes too. ) And then he decided to wash the blueberries in a container onthe counter. We are almost out of Palmolive thanks to my little dishwasher (and food washer).

Wonder what he will do today for entertainment (or embarrasment) value. We do have his Early Intervention yearly eval here today - maybe he will be napping then!



Now i must go and save the kitty litter. I heard Trevor walk up the stairs and he just loves using the kitty pooper scooper next to the kitty box. Barney isn't keeping him tuned in so much these days, sigh!

Today was a mixed bag

I survived 5 days of being home with the kids during the winter with 3 days being too cold to play outside! Please spring get here soon!! We had 2 playdates this week which was really nice to keep the boys out of each others hair. Mostly though we spent the time just staying in and haning out. (which is what tends to get the boys all rambunctious and wild!) Below are a few pics from a playdate at a friends house (thank you Kathy for letting us eat your food and mess up your house!)

Ryan and Aden

Stephen and Maia playing a computer game

Trevor and Cole - what buds they are!

What to do when its 30 below? Play Gameboy in your warm n fuzzy robe says Ryan!

Stephen on the other hand prefers Playstation or WII (again notice the nice warm n fuzzy robe)

then me and my little man just snuggle on the couch with our heating blanket!

Today at least was not as cold as it had been, but it was a bit of an irritating day. I got a call that the vitamin D supplement Trevor's endocrinologist ordered is not covered by insurance and it is almost 200.00!! The insurance will only cover pill form. A 2 year old can't swallow this huge pill - get real!

I also got a call today that all of Trevors Bm's that I collected for 3 whole days was not accepted at the lab to perform the Fecal Fat Quantifiaction. apparantly I am supposed to have their sterile containers to send it in (They are in Wisconsin - my lab here and my doctor never mentioned this. Now that really just nauseates me to imagine goign through that again!

I learned this week that I did not need to have Trevor's test for CF on Monday. I learned on Wednesday that Trevor can't possibly have it since I was tested when I was pregnant with him and I did not have it.

Sometimes it really just feels like I am spinning my wheels and the whole medical community is laughing their butts off at me!

Today I had a developmental therapist at my house. i had gottent he impression that even though the speech therapist had said we might want to have him have speech 2 times a week that he was still doing well. I didn't get that impression from the developmental therapist. Apparantly I was saying he could say words, but they weren't the actual words - they were aproximations, so they don't count for total words (I thought they did). So his speech development seems to be more lacking than I thought. On the bright side - with his OT and the speech, he has a better chance to get into Prairie with an IEP and I won't have to pay that (thank goodness becuase I will need that to pay for everything my insurance is not covering!)

Seriously though, there were some nice moments of the day. I was very proud of Trevor today. He may not have many recognizable words, but he showed the therapist just how smart he is. He really is very bright. I don't know why he is not progressing with the speech (coudl it be the colds and ear infections affecting his hearing - yep, quite possibly!), but he definitely is a smart little guy (ok maybe he isn't coutning into the teens like some other toddlers I've heard, but he is starting to count a bit.

Another highlight of the day was a package that was delivere dto me. In it were fresh flowers. Beautiful flowers in condolances of my dad's passing. It was such a nice feeling to know someone was thinkin gof me and remember ing my dad.

I also got another picture of my dad. I got an email from a recentlty aquainted family member and she had a picture of my dad as a five year old. It will be cherished.

And, I finally finished the book for book club. I suffered through "Great Expectations". not my favorite, but I'm glad its done!

So I guess I can look at today as having a glass half full or half empty, maybe i'll go with half full! Now onto tomorrow - (Tomorrow is Evaluation Day for Trevor and Early Intervention.)

Another test for Trevor

Another day, another procedure for Trevor . .

After last week's Fecal Fat Quantification, just about anything is preferrable to help us get some answers about Trevor and his lack of weight gain. I don't have any answers from the Fecal Fat quantification, but hope to hear something later this week.

So, today we were at Edward Hospital for Trevor's CF sweat test (cystic fibrosis). It went better than I anticipated. I did have to wait 45 mins for them to call him back, but then they hooked him up to a small little device that induced heat and then put this round "thingy" on his arm to collect sweat and we went of to JambaJava for lunch (just out the outpatient procedure doors) with his sweat collector on and then back to check and see if he sweated enough after 1/2 an hour. I've heard stories of people doing this several times (waiting a couple of hours) in trying to collect enough sweat.

I'm happy to say, it was "no sweat" or should I say, it was enough sweat! When we came back after lunch, his little sweat collector was removed and it was deemed to have enough sweat!

We left home for the procedure at 10:00 and are already back before 1:00. (And this time I was even able to go straight to my car - my car always seems to park itself somewhere else from where I remember leaving it).

My big appt of the day is over, wheww. I am happy to have this off my to do list (its been on it for a year - it didn't seem much of a priority as it was a very slim possibility, but now they really are looking to get things ruled out). I should have the results as early as tomorrow.

Now to get ready for tomorrow. We will see Florence our nutritionist. I am actually looking forward to this because I think Trevor has been eating well lately, so I'm hoping for a nice weight gain! I am usually very anxious and worried when we have a weight check, but not this week. IT has been a month since our last weight check as we had to cancel our last appt due to going to Arkansas.

Next week will be Trevor's Early Intervention yearly eval. After that hopefully things will settle down a bit and we will be back to our normal therapy appts and dr appts without all the extra meetings for EI (Early Intervention) and procedures.

Read at your own risk - I'm on poop patrol

My blog has been filled with sadness, grief and ramblings of a mad woman for the past month. I am trying to think of something uplifting to blog about, but I got nothing”. Instead, maybe some more ramblings from a woman losing it. (and be prepared, this is gonna be messy!)

So, today is day 2 in our prep for the fecal fat quantification. “Fecal what what”?? You ask? Right, well it is FECAL FAT QUANTIFICATION. After our latest trip to our Peds GI, he is having us collect poop for 3 days. Not just a sample, but I am to collect all of the fecal matter. Now this might not seem like such a terrible job if you are a mom or a nurse. But then again, maybe you don’t have the type of “pooper boy” that I do. Trevor has never had solid stools. They have always been lose and runny since I can remember. They just vary in degrees but usually are like pudding – unless I let him have regular yogurt, then it is runnier and ickier (I know great technical terms I am using).

So, first day I did what the Dr. told me and I put the diaper on backwards so the more plastic part of the diaper was on the instead, Thus the poop would not soak in. After day 1 we had wet through and me and Trevor both smelled like urine as the pee totally ran out. Even after I did the one diaper inside out then put an additional diaper right ways over it, it did not stop from the pee seeping through and getting all over. So last night I decided to try something else. I took my Saran wrap and I cut a piece to fit the inside of the diaper and taped it in there. It had to be just right so it would cover the poop area, but not cover the pee area. It worked very well, but Trevor is a Sensory kid, so of course the plastic in his diaper made him uncomfortable and he kept telling me he had a boo boo in his butt. So we are a little over our 48 hours into the 72 hour span. I have collected 4 samples so far. I have to say they are small deposits, so not sure how the test will work – It seems a bit less than he usually “produces”. Yesterday I almost lost my cookies trying to scrape the pudding out of the backwards diaper. It does seem to come off the Saran wrap better, but the stools were also not as runny today, so that helped too.
Tomorrow I get to take the samples out of my fridge and bring them to a lab and get more blood work. At this point I am a sheep and just doing what they tell me. Not sure I quite know what exactly they are testing for, but they are looking into things which is better than not knowing what else to do which is how I went home from the Endocrinologist last month and it seemed that was what was going to happen at the last appt with the GI doc. I believe they are checking to make sure Trevor doesn’t have any absorption issues to explain his malnourishment. I know they will check his immuglobin and some other things and I guess that may tell us how his immune system is working.

So tonight after I finish blogging, I will be taking 2nd dear son for a CT scan – I believe to check for an infection in the brain (again I am a sheep and was in such a hurry to get out of the dr’s office and on the road to Arkansas I wasn’t totally following what the next step was for him).
Tomorrow will be another fun day of collecting Trevors “little presents” and then off to the school for some kareokee. The kids have their Winter parties tomorrow as they were cancelled due to snow days the day before witner break. So I get to leave my poop patrol for a couple of hours and go watch the kids dance and goof around.

With all the diaper du du collecting, and dr appts, who had time to stop and grieve for my dad. I do find myself thinking of him often and when I need a good cry, I come to my blog and listen to the music that reminds me of him and see his pictures.
Wish me luck in my last day of poop patrol. It does smell a bit foul in here, time to go check for a deposit. (aren’t you glad I am not inserting pictures!!)

I was trying real hard to come up with great euphanisms for those "little brown beauties", but I am fresh out.

Terrible Twos-Day

Its "Terrible Twos-day"

Yep, Trevor is two, but actually I have to say the terrible twos are not bad at age 2, they were bad at 18 mos-about 24 (or maybe up to25 mos but mostly back in the 18, 19 month range). I couldn't leave him alone for a second back then or he would roll his kitchen chair (his step stool on wheels) all around the kitchen. He wheeled it over to the microwave and started it (i was close by and got ot it in 2 secs so no problem). He had poured out the salt more times than I can count (yes I did move it to higher up counters and such, but it somehow would end up back on the table and in his sight of vision). He also liked starting up the dishwasher, and taking all the little sticky things on the inside of the cabinets so they don't slam hard. And lets not forget throwing out Tupperware bowls and over 100 dollars of stamps. i really was at my witts end back then. Thank goodness he has always been cute and I could mostly laugh. And those are just some of the things I am remembering off the top of my head. I wondered how I would keep him safe, stay sane, and not get some bladder problems from trying to wait till nap time to use the bathroom.

So anyhow, technically he is 27 months and definitely two. But the twos are easier in lots of ways than the 18 mos, 19 mos period. He does understand when i tell him he has to finish a meatball before he can have a cookie. He is much better at anticipating things, and he loves to clean and be helpful (really he loves vaccuming, dusting, windexig, doing dishes, putting stuff in the dishwasher and he loves putting clothes in the washer - he flings the clothes in the washter from down below when he hears me start the water running. He is pretty smart and although he doesn't have many words yet, he definitely understands a lot more than you would think he does.

His latest thing is having temper tantrums when he doesn't get his way. Pretty typical, but I laugh my butt off watching him do it. The temper tantrum isn't the funny thing, its how he does it. I hope to capture it on tape. When he is in the kitchen, he knows the floor is hard, so he gently "throw's himself down on it and then gently knocks his head on the floor, and then looks to see if we are watching. Try as I might, I can't help but laugh. It is too funny watching him be so gentle knowing if he isn't that he will hurt himself. So obviously he isn't not really having a tantrum - he's testing his manipulation skills.

I've been a bit lax about time outs with him, but he threw peas today at me during my dinner (he was already done with his, but decided he wanted my peas, but then didn't want them). So he went to time out. I know it is not funny and I did put him in time out, but it is so hard being the disciplinarian with him at times because he is so cute and funny and for so long he was just such a crabby crabby baby (silent reflux and not being able to communicate and being lactose intlerant will do that to you!). so anyhow, he did his time out and I told him to say he was sorry - he signed it and then we hugged and all was better.

I definiltey think the terrible twos have their moments, but mostly this is a fun stage aside from the tantrums and the daredevil stunts he does that will give me heart palpitations.

We go to a little class called Little Learners on Teusday. It's a mom and tot class. I really like going to see how other 2 year olds are. Sometimes its a good measure to see how my little one is doing. Its easy to baby him because he is so tiny and speech delayed, but he is pretty smart and doesn't need the baby-ing probably as much as I want to give it. I remember a year ago he was in Little Learners for the first time - it was a very tough experience. He cried, did not want to let go of me so I could get my coat off. Did not want anyone to sing his name (made him cry). I believe we did leave early several times. I was just learning about his Sensory Sensativities this time last year (and it was about this time he was diagnosed with Failure to Thrive). What a difference a year makes. He is doing wonderul in the class. he loves the class and even has little "friends".

So maybe the Terrible twos aren't so terrible. Maybe I might even consider calling them the Terrific twos - he is eating well, sleeping well, gaining some weight, talking more, getting over some of his Sensory issues. So all in all, I am really liking the Two's!! (Except when I open the fridge and meatball sauce is oozing out of it and leaving marks like a blood trail along my kitchen, sigh . . . . )

Two going on twenty

My what big shoes to fill!!

OK, I was trying to share a slide show. It is so much better as a slideshow!

Guess I am showing my non techy-ness again!! Trevor really cracks me up all the time. I do believe he thinks he is an adult.

Trevor and his re-occurring "under the weather for November" pattern

This is Trevor in November 2006 (almost 4 mos old) Notice the nebulizer equipment on the table in the background. He is getting over phnemonia. (but look at that smile)

This is Trevor last year around Halloween. (Notice the Tiger costume on the couch). He again needed nebulizer treatments.

Its now officially November. I am in denial about that as I am enjoying this marvelous weather we had today and should have for a couple more days. I am also sick as a dog!! I've had a horrible cough that is sounds so bad that people get out of my way at the grocery store and don't seem to want to touch anything I have touched, lol!

But its not just me being sick that is making me grumpy. Trevor is still under the weather too. He has been sick for almost 10 days. He would cough so hard at night ( several nights in a row) that it sounded like he was choking. And, actually a few times has thrown up because he had so much post nasal drip that it made him cough so hard he threw up. (Now I am doing that!) It's tough being in this household as we don't seem to have much resistance to any colds and viruses. I do clean my house, I do try to make the boys sanitze their hands after they get home from school and before the eat and such. Still, we are sick so much of the time, which is one of the reasons I do dread the winter months.

I was looking at old photos and realized that last year (when he was 15 months), Trevor didn't go trick or treating as he was sick (we gave him nebulizer treatments). The year before not long after Halloween (right around Thanks giving), trevor had phenmonia and RSV.



It was a little depressing to have the nutrionist here today. He has lost 5 oz since his last visit with her 2 weeks ago. He did grow 1/4 of an inch in a month, so that is something. It always seems 2 steps forward and 2 steps back. Hopefully he will gain his weight back and then some very quickly after this latest cold is gone. At least we haven't had to give him nebulizer treatments this time! Lets hope next year he won't be sick!

Help, my son has an addiction!

Help, I think I am an enabler!!

I need Barney-a-non!! My son is addicted to Barney!!

It started out innocently enough, don't all addictions start out that way?

Trevor had never been one to be able to even sit and watch the TV for more than 30 seconds till he was close to 2 years old. And even then, he usually wouldn't watch more than 10 minutes at a time. We had The Einstein tapes, the signing Times tapes, and would try to see if he would watch Sesame Street every now and again among some other nice little stimulating baby and toddler tapes. Nope, he never seemed to like them. OK, so for most moms, this isn't a bad thing. I admit, I do put on a video or something for one of the kids if it means I might be able to make some phone calls (Dr appts., red ribbon or other PTA stuff) or if it means I can sort clothes and start a load of laundry. So while I try to not let my kids watch a ton of TV, I do find it very helpful at times (I've had 2 kids that are colicky till past 2 years old, and are needy and are hard to entertain - so yes, I do admit I'm a terrible mom and try to get them to watch TV)

Anyhow, eventually Trevor liked watching the Signing Times DVD and we were so happy. He was picking up more signs and he just loved the nice music that went with the DVD. So we would put it on every other day or so. So then I wondered maybe he might like to watch something else? So I look in my old videos and see Barney and decide to try him. He does like the Barney stuffed animal he has, so in I pop the tape. (Isn't he cute when he was less than 3 months old just staring at barney!)

Guess what, he started liking Barney. It was so nice to be able to go to the bathroom, put laundry in, enter Tupperware orders and all kinds of things instead of leaving for 20 seconds and find him trying to press the microwave buttons. He is very fast and smart and into everything, so some nice toddler friendly diversions were needed.

So slowly, ever so slowly, we would use the Barney tapes as this was one thing that he would sit for and be in rapt attention while watching. When we were doing homework with the other kids and Trevor would get crabby, in the barney tape went. When Trevor was really hungry, but I wasn't done making his dinner, in the barney tape would go. In the morning, when I had a hard time keeping him occupied while I showered, I started taking him downstairs and putting the Barney tape in (his brothers are not happy about this as they missed being able to play a tape or play on the WII game before mom came downstairs!)

So now, here I am, an enabler to my son's addiction to Barney. He is constantly whining "ayee, ayee - or sometimes he says "Arnee, arnee" (Barney, Barney) and whines and cries and sometimes is quite inconsolable till he next sees Barney.

Now Barney is pretty benign, and at least maybe he will learn some good lessons; but jeez I don't know how much more I can take of Barney! Ryan never went through a Barney phase, But Stephen loved Barney when he was a tot. I survived it then, I guess I will just have to survive it again and try to gradually lessen our Barney viewing. too bad the Fall season is here and winter isn't far behind as we will be spending more and more time inside! So, maybe I should take the Barney tape I bought back to the store and get something else for Trevor's stocking for Christmas!

My FTT child Trevor and his first 2 years

All about Trevor . . . The first 2 years

Trevor is my little miracle baby. I was told at 6 weeks along that I would most likely miscarry (90% chance I would miscarry as they saw nothing but an empty sack on the ultra sound at 6 weeks pregnant). This made it very difficult for me to enjoy the pregnancy early on as I continued to have problems during the first and second trimesters. Despite the problems early on, I came out of it with a healthy baby boy. Although this baby was due in the 3rd week in August, he came 1 day before my 37th week so he turned out to be a July baby. I realize now that I had been in labor a full day before I realized it (and all through the day of my brother's wedding!). It will always be easy to remember my brother's anniversary date!
In some ways it was fortunate that I had him early as my parents who were in town for the wedding got to see thier newest grandson shortly after he was born. And, it was nice that Trevor stayed in me till after the wedding was over (water broke about 4 hours after we got home from the reception!)

It was a difficult delivery in many ways as he was not descending after hours and hours of labor and hours and hours passing from when my water broke. (and heart rate decels on the baby and a me running a fever) and not to mention the fact that the epidural did not work the last couple of hours of my labor).

He was a beautiful and baby. And, like ryan he didn't seem to want to sleep like a newborn, was very alert and seemed very sensative to noise and he was also a good eater.

We were adjusting to being a family of 5 and trying to figure out our new little boy who had colic. When he was 3 months old we had him Christened. It was a very special day for us. Up until he turned 4 months, he had been a very healthy baby, but at 4 months, he got pneumonia and RSV. At 5 ½ months he had bronchitis. From there on he seemed to be sick every other week. He spent more time sick than being healthy.. Despite his fussiness/colic and dealing with the constant illnesses he had, we enjoyed having this new little being in our family. He had some what I thought of as quirky characteristics such as his sensitivity to noise, his constant need for touching, and had texture issues which I later learned was because he had sensory processing issues. Around 9 months, Trevor started to fall off the growth chart. He has always been on the small side (and of course for me as his mother we didn’t expect him to be big), but he kept losing ground on the growth charts and with his constant illnesses it was hard to get much of a weight gain. We began introducing him to table foods as he had done well with the baby foods, but he really didn’t do well with much of the table foods. When I took him for his 12 month check up, I told the doctor how Trevor would spit out foods with texture – anything with ground beef, chicken, didn’t like rice, even his favorite thing watermelon – he would just suck it, then spit it out. Our pediatrician recommended going to a speech therapist to have his food texture issues checked out. It was there that Sensory issues was first brought up to me. I had never heard of Sensory Processing Disorder (SPD) or Sensory Integration Disorder (SID), but after doing some research it all made sense. Trevor had some mild sensory issues and since it was greatly affecting his weight gain and eating, we began food therapy for him. Around the time he was diagnosed with FTT (failure to thrive). I was worried not just about his food texture issues, his overall crabby/fussiness and his lack of wiehgt gain, but also about how sickly he always was. Colds, flus, viruses, ear infections always seemed to plague us. As much as we love him, it has been difficult to help him gain weight and stay healthy and to try to help him deal with whatever sensory things were bothering him. He seemed to have "colic" for lack of a better word for over 19 months. What worried me the most was whent he doctors tell me his weight and height ratio are not in line with each other and that his BMI was very low. He was so small (0.3% for weight compared to national average, and about 3 percent for height). The doctor was concerned about his height to weight ratio as they should be more in sinc and of course he had been sick constantly so she offered up some suggestions on things we should check into to rule out possible causes of his fussiness/crying jags, and his lack of growth and weight gain. The doctors did not actually label Trevor failure to thrive till he was almost 15 months old alhtough they aluded to it at 12 months and beyond that. One of the first things we had done was a video swallow study so we could start "food therapy". We also had a consultation with a pediatric nutritionist, tested for celiac deisease and allergies and then a consult with a Pediatric gastroenterologist. The video swallow came out fine (no physical obstructions or any physical reason he wasn’t eating table food). The allergy tests didn’t show any allergies for what he was tested for. The consult with the nutritionist gave me new information on how to up trevor’s calories and get more protein in his diet – and at this point we were off dairy as he didn’t do well when he had milk or milk products (up at night screaming, even screaming in his high chair after a few bites/sips). We had the endoscopy procedure done in Feb at close to 18 months. Althought the doctor didn’t see any signs of silent reflux/esophogitus, the lab results from the biopsy taken that day showed he had some mild esophogitus. Trevor’s Dr. had us start giving him prevacid 15 ml tablet once a day. I also decided to have Trevor evaluated by Early intervention after he hit 15 months old and only had 1 word (hi). I wanted to see if he would qualify for speech services as well as food therapy and OT for sensory issues. He was evaluated in January when he was 17 months and he barely qualified for speech services, his fine and gross motor skills were great. He could be such a wonderfully happy baby when he is eating and sleeping well and getting lots of attention. And, he is extremely smart for his age (we are so proud of him for being able to figure out so many things at such a young age) He continued to still be sick a lot and although making progress in food therapy with textures and variety, he still struggled to maintain and gain weight. He started speech therapy in February and has made slow and steady progress. He picked up so quickly on signing and has many signs that he uses. It is so amazing how fast he could be introduced to a sign and then start using it. Between the food therapy and speech therapy, being on medicine for silent reflux, watching his diet, my once usually crabby/fussy boy started becoming my free spirited, adventurous and most importantly happy little boy. We still continued to deal with sensory issues (we didn’t get an OT assigned to us till June of this year), and feeding issues, and sleep issues) but we are constantly making progress! He was doing so well with his speech till end of May when we lost his speech therapist (we are still waiting for a new therapist almost 6 weeks later). He has added several words. In reading this it may sound as if Trevor has major problems ahead of him, but I am confident that we are figuring out how to help him. To meet him and interact with him, you would not ever know that he has sensory issues, that he has eating issues or even that he is a failure to thrive baby. He looks perfectly normal, and at this time he is very friendly, social, mischevious and so full of energy and of life. He is a wonderful little boy and more often happy than not. We have a better understanding of what his mild sensory issues are and how to prevent them. He is doing so well in speech and we have stopped food therapy so our big concerns these days are mostly about his lack of weight gain and his Failure to Thrive. We had a hearing test and it came out fine. That plus his exploding vocabulary make me feel pretty confident that he will continue to progress in his speech and maybe will even not be delayed in speech by pre-school (we'll see!).

This summer we saw an endocrinologist for his "short stature" and his "failure to thrive". We recently had a growth hormone stim test and took a bone age scan both tests ordered by the endocrinologist and will be having a follow up appt with the Dr. in October to discuss the results. His weight gain continues to be hap-hazzard and we will start new vitamins soon in addition to adding oil to his soy milk and pre-digested liquid protein to his juice (and adding morecalories and protein where we can). He seems to be doing well with regard to his sensory issues (in which we have an OT come out every other week for this).

Trevor turned 2 at the end of July. It has been a difficult journey at times, but the first two years of Trevor’s life have been great none the less. I am so happy that I am able to get help from dr’s and specialists so that he can be as healthy and happy as he can be. Out of all my boys, Trevor seems like he may be the smartest at age 18 months – 2years old (just don't mention this to his brothers!) . He is definitely the most mischevious (he sure keeps me on my toes – he finds every loophole we have in our babyproofing), he may be our most adventurous too. He can be very silly and is oh so playful and loving. I can only imagine how he will continue to grow and learn and do new things. At hius last weight check almost 2 weeks ago at 25 months he weighed in at 20 lbs 12 oz. And height wise he was 32 1/4 in tall. He is still under zero percent for weight, but his height if I remember correctly was at 5%.
The next thing on the list is to have the CF sweat test. Another test to rule out cystic fibrosis, and possibly more allergy testing. I'm not in a hurry to have the test done as I hightly doubt thatis his problem, but the Dr's keep mentioning that I need to get that taken care of.
I will update when we have our consult with the Endocrinloligst

Trevor's 2nd birthday. . . .

Trevor turned 2 at the end of July. the time has gone by so fast. Most of the time I just wish time would slow down so I can enjoy his babyhood while it lasts. Of course he is two now, so technically he is a toddler now! The past 2 years have sure had many up and down moments with illness after illness, months and months of what I can best describe as "colicky behavior" (probably from the silent reflux) and constant doctor apptmts and therapy evaluations and appointments have made it a rather exhausting time. I am happy to say that he is growing into a wonderful little boy with such a sweet personality.

I wanted to have a big celebration for his 2nd birthday. I invited almost as many people to this party as I did to his 1st birthday party and his Christening party. It just seemed that after all that has gone on in the past year a big celebration was warranted on making it through - his reflux, his irritability (sensory issues), his speech delay (making wonderful progress and is catching up fast), and his failure to thrive diagnosis (he is starting to make more steady gains), plus the constant colds, flus, viruses and infections that plagued him for over 1 1/2 years (and I am happy to say has lessened considerably the past couple of months); as I said so much to celebrate on his 2nd birthday!

The day of his birthday might not have been so celebratory as he went to the Dr and got some vaccines. I was busy cleaning for his upcoming party so just some cupcakes for the birthday boy with the birthday song with our family of 5 was how we celebrated the actual birthday day.

For the party, we had a great day weather wise. It was nice that we could fit a lot of people on the deck in the backyard and we weren't all crammed into the house. We had a Winnie thePooh theme. He was super cute in his Tigger outfit, but didn't care to wear his birthday hat. He was very social and loved all the attention. We had a pinata and he loved giving that a couple of whacks, and of course he loved the cake. He was so cute trying to blow out the candles (he usually does sshh instead of blowing). He got some great gifts and everyone was happy to see him. He was in good spirits and everyone commented on how big he is getting and how healthy he looked. He got some great presents and had a ball ripping the paper off the packages.

At 2, Trevor finally made it to 20 lbs - such a breakthrough to finally hit that milestone. His height has also grown, he is 32 1/2 inches tall, now has aprox 25-30 words (and several signs ) he started with 1 word at 15 months and then about 10 words at 19 months, and he has in the past month or so started saying 2 word phrases so a vocabulary explosion is happening with him. His sensory sesitivities are getting very easy to predict and so we are not having huge tantrums and melt downs as we are able to cut them off most of the time before they begin. He is eating a good variety of food and no longer has texture issues (we stopped food therapy in June). He tolerates being seperated from mom so much easier now. So there is so much to celebrate and be thankful for as he turns 2.

Just a couple of months ago I was dreading his 2nd birthday coming. I know he can't stay a baby forever, but I wanted just a little more time with him as a baby. I have to say though, that right now is a wonderful place with him being 2 as his personality is emerging and I can see how smart he is and how funny he is. 2 year olds may get the bad wrap of the terrible twos, but I think the terrible 18 months would be more fitting. Yes, he is getting into more stuff and trying to keep him from climbing everything and getting into things is still a big problem, but still he is getting bigger and talking more and interacting with us more and it is great to see him "Blossoming". I love hearing him say new words which are coming out a lot now and his new phrases "det dow" - "get down" - he sure says that one alot because as I mentioned he sure hears that one a lot from us. I love how he goes up to his brother and rubs noses with him or pats his head. I love when he grabs me and gives me a big bear hug - babies can't do that so I am starting to really enjoy my talking, bear hugging, rasberry giving, giggly tickley little 2 year old.