Wednesday, November 07, 2007

It's been awhile

Well, it's been awhile. Life has been hectic. We've been looking at houses off and on for over a year now. One day Sean came to me with a floorplan on a piece of paper and said "What do you think of this." I said, it's nice but we';ll have to see it. The next weekend we saw it and loved it. It was about 90% done and not many choiuces lewft. The folowing weekend we put down a deposit on it aqnd got started on the contract. WOW. It's been about 2 months since then and we're now the proud homeowners of an almost 3,000 sq. foot home. It is still very surreal and doesn't quite feel like "home yet". The kids are LOVING it. We're at the end of a culdesac so our lot is huge and the kids can wear off their energy. It's a nice change from 5 of us being cramped into a 2 bedroom apartment. So, that's the good news.

The not so good news is Emma has been sick for over a month. We went to the doctor once a week for 4 weeks, first it was a cold, then ear infection, then Oops, it moved into her lungs and she now has pnuemonia. She was one step away from being in a hospital. Unfortunately she got denied for Synagis this year which is an immunization which helps porotect against rsv and other illnesses which are harder on kids with lung damage and compromised immune systems. We tried fighting it but not that she's sick they really won't give it to her. It's just SO frustrating. To make matters worth she hadn't been tube fed in over 3 weeks. She wasn't gaining weightm, but she wasn't losing either. Now, she's hardly eating anything, she's lost alot of weight, the doctor was concerned she's getting back to almost failure to thrive and wants her watched closely, and we're back to tube feeding. She looks anorexic. It's SO SO SO frustrating. It's hard to put things into prospective and remember just how BLESSED we are and know that in the end it will turn out alright. It just seems like one thing after another. On a good note after a million breathing treatments, 2 courses of antibiotics, an oral steroid, an inhaler steroid, and a few other things she seems to be on the upswing and we're hoping to avoid the hospital.

On the Caden front. I need to go down to the school district and see if they have a preschool class available for him. Hopefully I can get around to that this week and get something going. If not he'll be going to "real" school next year. YIKES! I can't believe my BABY is almost 5. Oh and he's a "genius", just ask him. He'll tell ya.

Lily is doing good. All attitude but still knows when to come up and plant a big ole kiss on you. We are having her evaluated for possible speech therapy. Her vocabulary is large but her pronunciation is not quite there. By 2 they said you should be able to understand 50% of what she says. She's borderline with family and we find outselves asking ehr "what, huh, say it again." alot. Strangers, forget it. She's talking abother language to them. So hopefully, we can get that going and get her into some speech therapy which might make life less frustrating for everyone. It's hard to understand her which gets her frustrated and it's a vicous circle.

Sean and I are doing well. Working, working, working. The business is holding steady even though the housing market stinks. We're actually managing to have a "record year" YAY. The commute isn't as bad as we though it would be from where we live to our business which is good, and since we drive together it also gives us some one on one time to be husband and wife and not just mommy and daddy so it's a nice break as well.

Other than thast, nothing much going on. I'll try and get some new pics on here when I get home, but wanted to update everyone. :)

Tuesday, September 18, 2007

Emma is doing well with her eating. She's being given a can of pediasure by tube at night, but is taking alot more orally everyday. She's starting to gain weight again instead of losing and is up to 22 lbs. 1 oz. YAY

Monday, August 20, 2007

Week 1 weigh-in

Unfortunately, Emma's down to 21 lbs. 14 ounces. so she's lost. she's easting pretty well though, we'll go another week and see if she loses less or holds steady.

Friday, August 17, 2007

Long time, no see.

I know it's been forever and a day since I blogged, but really there hasn't been much going on besides this therapy and that. This appointment and that. The kids are doing well. Caden starts OT again when school starts. Lily is just as charming as always and it's been confirmed that she really was meant to be an only child. ;) And Emma got her first haircut which makes her look about 2 years old. Nothing major going on...until NOW!

I enjoyed being a stay at home mom for the better part of the past 5 years but I really felt like something was missing. I missed the adult interaction, I wasn't feeling AS fulfilled and quite frankly I think the kids were getting bored with me as well. I ended up going back to work at our business. My good friend Allie is our live in nanny which works out well. The kids adore her and it's a renewed energy in our home. I feel like our time as a family together is more productive and all around just better. Maybe because we appreciate it more since there is less of it. I'm enjoying working and the company is benefiting and the kids are enjoying their new buddy.

On an even bigger note we've begun the TUBE WEANING process for Emma. It's amazing. I debated whether to post or not on the off chance of jinxing it, but decided that it just may help somebody else out there in our same position. For the past few months Emma has been off all reflux meds and showing very little to no signs of reflux. We've tinkered with food here and there and half heartily began to tube wean before. Our thoughts were if we decreased tube feedings, instinct would kick in and she would eat. Wrong, she just lost weight, got frustrated, and we got frustrated as well. so we held off. We had some more testing done which has ruled out any remaining medical conditions which would prevent her from eating. It appears that her medical issues around eating are gone (at least for now). YAY! So we made an appointment with OT. Unfortunately, Kaiser doesn't really offer as intensive feeding therapy as she needs but her OT is willing to call me daily for reports, give advice etc. by phone. Which is cheaper than the $6,000+ out of pocket elsewhere.

So, Tuesday we had the appt. and we booth agreed that really she has the ability to eat and the will to eat but she's just not hungry enough. The best course of action would be to reduce (drastically) the amount of tube feedings to get her to eat more in the day. Just like last time. Unlike last time, we will allow her to lose some weight and see what she does and hopefully eventually she'll take more and more. this method models closely what an intensive inpatient program would do. The first night we cut her tube feedings in half. She was getting 3 cans of pediasure so we cut it down to 1 1/2. We did that for a few nights, than went own to 1. It's worked so far. She's eating 3 meals a day. Not A LOT, but for her it's a HUGE improvement. Last night she only got 1 can overnight. Today she ate a lot more. for breakfast she had a 1/4 waffle, 3 ounces of pediasure, and a saltine cracker. For lunch she had a box of juice (4 ounces), a half can of gerber graduates macaroni and cheese, for dinner we went out to dinner and she ate about a 1/2 cup of spaghetti, a french fry, and drank 2 1/2 ounces of pediasure. This is HUGE!!! She fell asleep in the car so we decided tonight was the night not to tube feed her overnight and begin our war against the tube.

I thought this day would never come. It's scary and invigorating all at the same time. I'm afraid to get my hopes up and then have to watch her backslide. I'm trying to stay guarded but it's so hard after day in and day out of feeding my baby through a tube and now finally seeing the light at the end of the tunnel. No matter what though, this is a step in the positive direction and we now know that it's truly only a matter of time before she will no longer dependant on her tube. It's not a matter of if, but a matter of when.

I will try and update at least once a week with her weight and her progress. On Monday, 8/13/07 she weighed in at 23 lbs. 7 1/2 oz. I will weigh her on Monday and hopefully she will maintain her weight and possibly gain and not lose! Continued prayers are always appreciated as always!

Friday, April 13, 2007

Caden's Autism Team Evaluation Results

I'll give the nutshell since it was about an hour long. I went to meet with the team for results this afternoon. He is clearly autistic but not classic autistic. His vocabulary is way too high. He is definitely a sensory seeker and show alot of signs for adhd and ODD (oppositional defiance disorder). They're not ready to diagonse yet because of age, but once he starts school if he's exhibiting the same signs and not functioning well in school (at this point he wouldn't be, but i'll touch on that in a few) then will delve into that diagnosis then.

Anyways, Cognitively for speech, meaning understanding speech and able to carry on conversation he's at the 24 month level. This surprised me as I didn't realize he was that far behind, because he has a huge vocabulary but the understanding isn't really rhere. Gross motor skill he's slightly delayed at 36 months or 3 1/2 years. Fine motor skills he's a "solid" 24 months, not less not more. Once again we knew he was behind but putting an age on it really hits harder than I thought it would.

So, the plan of action. Take this report back to the school district and push harder to have him put into a special education class. The doctors have recommended 5 days a week. If they can't provide it push for them to help place him into a preschool specializing in special needs and for them to fund it. We are also at the point of possibly hiring an advocate as it seems this may be a long and dirty battle so to speak without one. At this point it's pretty evident that Caden would not do well i a school enviroment without a 1:1 ratio so ni the next year we'll be working on finding him an aid. Once he's in a public school (not just IEP) than they'll be "forced" to get him the help he needs. In the meantime, we chug along working with him in OT, and working on the school district getting him the resources he needs.

Wednesday, March 21, 2007

Long Overdue Update

It's been brought to my attention by some EmmaFans that this update is LONG overdue. Partly out of laziness, and partly because not alot has been going on but alot all at the same time. Mostly, same stuff different day. i guess I'll start where the last update ended. We ended up losing our rat Squirt tragically and were all upset. Since then we have lost the other original rat Dora due to a respiratory infection. She went peacefully in my arms. We now currently have Kaiya (means little, she was a runt), Uboo, and "baby". they are so much fun and we never knew just how attached we would get. We even built them a new wooden cage with lots of toys and different levels!

I'll go through each one of us. Sean is doing ok but business is stressful as always. We've looked at houses and have decided with the market the way it is right now we'll be waiting to buy until it bottoms out most likely mid 2008. So, that's excited and a bit stressful. I have been doing alright. I had 2 "paralyzing" type spells and the doctors still don't know what's going on. I have had about a trillion med changes to help me sleep with no change. So, we'll be worrking on getting be healthier.

Caden is doing well. He still has good days and bad but he is so smart and his memory is sharp as a tack. He cracks us up with the things he says and does daily and is a joy to be around. He started a "play group" speech group and goes once a week on Thursdays and seems to really enjoy it. He'll also be starting occupational therapy for some sensory issues on Friday, for 45 minutes a week. His doctor's are less than thrilled with the school district and what they've offere and will be conductiong a 4 hour evaluation on the 30th to send to the district to get the ball rolling on getting him into an actual class. It was interesting to read the school's IEP report and a bit sad as well. On a side note Caden was born with a birthmark on his right shoulder which has gotten bigger/darker/hairier over the years. It's finally time to have it removed as there is a chance it could turn cancerous if left. Unfortunately, he'll have to go under general anesthesia for it, and that will be happening in about a month.

Lily is doing well, blossoming into quite th young lady. She is opinionated as ever and is still quite the Grandpa's girl. She's got him wrapped so tight around her finger it's not even funny. Her vocabulary is growing day by day and she is starting to crack us up with the things she says as well. She is also such the little mommy always wanting to make sure that Emma is okay and giving reassuring kisses when Emma cries.

Brings me to the Bemma. She is doing amazingly well. A month ago we were looking at wheelchairs and getting an idea for what she might need and what would be best for her. Fast forward a month and within the last 2 weeks she has loosened up, she has learn ing how to go from laying to hands and knees to sitting, and within the past few days has even learned to CRAWL. I am just beside myself with joy. Here's a link to her crawling:
She can now say Dada and Grandpa. Go figure. The verdict's still out on mama though. She's gaining weight steadily and is FINALLY on the charts. She currently weighs 19 1/2 lbs and is about 27 inches. As for her feeding tube, there's still really no end in sight. She still refluxes quite a bit from solid foods. But if that's the worst of her problems, than I'm quite alright with that!

It's that time again for the March of Dimes WalkAmerica. I've created a team Emma Bemma and we'll be walking in April to help raise funds and awareness for the march of dimes. They do alot of work towards finding a cure for prematurity. I've created this video to show a little bit about why we walk.
Feel free to share this link on your blogs, boards or through email. Every little bit counts!

Friday, January 26, 2007

Our home grew by 8 feet tonight!

Sean and I have toyed with the idea of getting some sort of small pet for awhile now (i.e. pat, hamster, rabbit). The kicker was when our accounting manager at work asked Caden if he wanted a rat for his birthday. Then he got excited so there was no turning back. Of course rats are social animals so we had to get two. Anyways his birthday party is tomorrow , but we picked them out tonight. $150 bucks later and we're home with Dora (the bigger one) and Squirt( the smaller one) they are both females. Dora is skiddish and "screams", we're hoping she gets used to us. But squirt is very sweet and loves to be held and carried in pockets. :) She slept on Sean's shoulder for about an hour tonight while he snoozed on the couch. It was really sweet. The kids just LOVE them and Lily shrieks from joy!

Tuesday, January 23, 2007


Well, Emma has gone up and down in weight worse than a yo yo dieter. The good news is the trend overall is upwards. She had a g.i. appt. today to burn off some granulation tissue (type of scar tissue) that formed around her button. She's 27 1/2 inches tall and 16 lbs 7 oz. (this bumps down to 16 lbs. Frequently). She is finally sitting unassisted (if we sit her up and bend her knees. hehe) Nowhere near standing, crawling or walking. She doesn't even roll, she scoots around on her back which has left an almost bald spot. It's kinda cute. Right now she is on 50 cc/hr for 20hr/day. This equals about 660 calories. She needs about 750/day. Her doctor typically switches tubefeeders to pediasure at 1 year and she is only a month away so she'll be switching within the week. The good news is Pediasure is covered by insurance so we'll have a copayment but better than the hundreds of dollars on formula each month! So, she'll start on Pediasure 3/4 strength, 50cc/hr for 20 hours. This equals 750 calories/day.

Some more good news. Emma is FINALLY on the growth chart. WOOHOO. She is 25% in height and 3% in weight (skinny minny), as far as height/weight proportionate she is 10th%. Not too shabby! Her weight goes up and down but the overall curve is upwards so we're thinking positive.

On a semi blah note, Emma is still not tolerating any solid foods. She has shown a lot of interest in eating as does really well, but anything except water makes her reflux flare up bad. We now are not even guesstimating a date to take out her tube. We will focus on just getting her the nutrients she needs to grow and meet milestones. Her prevacid is being upped to 1 solutab, twice daily. We're also throwing carafate back into the mix. Hopefully this will help keep her reflux at bay so we can introduce more solids and eventually wean from the tube. Like I said, we're not really aiming for a date other than "before she starts Kindergarten", according to the doctor. I don't mind the tube at all. It makes it a lot easier to not even think about it or to not dwell on it.

So, overall it was an okay appointment. We go back in 6 weeks again. On a side note, the new pump we got doesn't work right so it has to be sent back and an infinity needs to be ordered. So, we have the pet pump for a few more weeks. It never ends. lol.

Saturday, January 13, 2007

Long overdue Update!

Well, once again this is a long overdue update. I wish I could say it's because all was well, but unfortunately that's not the case. This may jump around a bit so bare with me. I will also be copying and pasting some things from emails and posts on message boards for more accurate descriptions. Emma ended up doing well healing from her second operation from her button. It looks great. There is some granulation tissue we are dealing with but overall it's pretty "nice" looking. We're also loving the Mic-Key button. It's much much easier.

On a not so good note about 3 weeks post surgery she had LOST weight. She lost 1/2 lb from the time of her surgery. Not good considering she's on continuous feeds. Here's an excerpt from a post back then.

"Anyways, right now she's gettin 45 cc's (1 1/2 ounces) every hour for 20 hours at 20cal/oz. = 600 calories a day. We're bumping her to 60cc's/hr. = 40 oz./day = 800 calories day. Hopefully she can handle the increase of amount. If not we'll have to up her formula from 20 cal/oz. to 24 cal/oz. which would be a step backwards. Her ped is thinking we're looking more realistically until age 3 or so rather than age 2 to getting her tube out. She says even that given her history is optimistic. She is also getting a referral for OT. YAY. On a good note she can now say Mama, Dada, and Baba and knows what they means. So while she can't really sit and is nowhere near crawling we have one smart cookie!"

So we're a bit over a week from when I wrote that. She's now getting 50 cc's/hr. for 20 hours. We have had to slowly move her up as she was not tolerating the increased dose well at all. We have also laid off the solids since it was causing her reflux to flare up way too bad. With all that said she HAS gained 8 oz. (half pound) in a week. YAY! She got her referral for OT but I still need to make the appt.

Along with the weight gain issues Em is also having some muscle stiffness. Could be caused by poor positioning while in the nicu, or the fact that she was premature. There is conceren though that she has a mild form of cerebral palsy. She is very stiff, had clenched fists more than 50% of the time, has rather spastic movements, delayed motor skills, and g.i. problems, along with failure to thrive issues. All these lead to cerebral palsy. I understand a diagnosis won't change anything but it's alot to take in. I know if she has it that it is a mild form and she will benefit from the OT and PT but it's just one more thing. It's also one of those things that there is no telling why she got it. I know she's definitely high risk for a complicated pregnancy/delivery, along with being a micro preemie. It probably didn't help that she needed to be resucitated on 3 different occasions. ::sigh:: Oh well.

Now, for more good news. We FINALLY got her new pump. We're still waiting for the bags to go with it so we can't use it yet, but getting it is a huge accomplishment. Somebody else who has Kaiser asked me how I got it because they were dealing with some same issues as we were being denied it. For those of you wondering, here's how:

"Let's just say it took a LONG time and quite a few appeals to get one. I had a G.I. willing to work with me. They CAN get one and WILL get one if you bother them enough. Basically have your g.i. write a prescription stating exactly WHY you need a non-drip chamber pump. Errors, mobile child, etc. When I say exact, I mean EXACT. Then it goes to the DME. Then you need to call the DME over and over and over to make sure they send it to apria. Then apria will tell them they don't cover them, don't have them, and can't get them. The DME will NOT call you back. You wait a few days/weeks and then call the DME back. Then call Apria back, then DME again. They tell you no. You go through this process about 6 times. FINALLY, you get ahold of someone WAY high up at Apria who approves the "upgrade" and waives the upgrade fee. The GOOD new for you (and I should post this somewhere here and meant to) Apparently, I got through to the guy high up. Well, my G.I. did and they have now contracted with Zevex as of the beginning of January. Over the next month or so they will be phasing out the Kangaroo pumps and bringing in Enteralites. They will eventually get the infinities and phase out the regular enteralites as they get more infinities. Like I said this was a LONG process! You can fight like I did, or you can wait a month or so until the new pumps start arriving. I would call you contact at Apria and ask though. I know our area is starting to get them the end of this month. I got mine today, but it was special ordered! If you need help or specific questions I'll be able to answer them if possible."

So, that's about it for Emma. Lily is doing well. She's our little firecracker though! Caden is a handful as always but so much fun as well. We have another IEP meeting for him. We're also going to be starting OT and a social skills class for him as well. We're working on getting him into headstart from 12:30-4:00 p.m. mon-friday as well. Both for his sake and mine. He thrives on structure and interaction with other kids. We just have to find the right enviroment for HIM. Hopefully, things will start falling into place for him though. My health issues are getting better. I had a few medication modifications and my symptoms are quite a bit better. Still having some trouble but nowhere near how it was. I am able to function which is something I won't take for granted anymore.

One last update. The kids birthdays are all quickly approaching. Caden's 4th birthday is the 31st, then Emma's 1st follows 2 weeks later on Feb. 5th, and last but not least Lily will be turning 2, two weeks later on March 5th. We'll be busy for awhile. The next updates will most likely be birthday updates.