Wednesday, December 31, 2008

Happy New Year

All I can saw is, WOW, I can't believe all the drama that my last post caused. It caused me 2 sleepless nights as I debated how to answer, but instead I just let it be.

I've got to say:

I now feel if/when I post all the great things that Kaitlyn does (that I don't normally have a lot of time to post about because there ARE so many great things) that I'm doing it because readers have told me to. uggh. I hate that pressure.

I've been dealing with some serious lack of sleep as Quinn is refluxy/colicky. It's been very difficult on me. Guess that's what motherhood is all about, just learning to operate on a totally lack of sleep with a baby who is either really upset or happy/laughing. We have extremes with Quinn. He goes 2 hours straight at night time cycling between crying, eating, burping spitting up, sleeping (for about 3 minutes) for 2 hours straight. He's no closer to sleeping more than 3 hours at a time. During the day he only sleeps for 20 minutes at a time. I've been begging to my docs to get him a different reflux med.

Kaitlyn is amazing. There are so many times EVERY single day that she does the most amazing things. Her eating has been tremendous as of late (was going to do a post solely on this subject) as I'm in awe at the difference in my little girl in the last year especially in the last 2 months. Her speech has just blossomed lately, she's talking all the time and is now saying more sentences. Just yesterday for the first time she started asking: "What's that?" Now that she's figured out I'll answer, she asks "what's that" for everything! it's her "why" question that I'd heard about. We went to costco and she asked "what's that" about a million times and it was joyous!

I tend to use my blog as my own cathartic therapy. I used to journal when I was younger. When I've gone back and re-read my journals, it seemed I always wrote about the bad stuff, not the good stuff. I think that I feel better after getting things off my chest, hence why the negative posts, and don't bother with the good posts (just too many little amazing moments and too busy) Please keep that in mind if my blog has been negative. I need to vent. Doesn't everyone?

It's now New Years Eve hug your children, hug your loved ones and be joyous!

New Years day update:

I forgot to mention a few things, I didn't want to delete the negative comments on my blog as I do believe in freedom of speech and differing opinions. Just as not everyone has to agree with me, by deleting "negative" comments isn't really allowing freedom of speech on all sides. Also, I think it can be helpful to take in negative comments, absorb and process them and see if there is anything that could be true. I'm always up for growing. Hence why I went a few days without responding I was too mad and upset and wanted to calm down a bit.

Thanks everyone for your support and I hope your 2009 is starting out great.

Sunday, December 28, 2008

Announcing "Extreme Preemie Syndrome"

I feel REALLY strongly about this.

There needs to be a new syndrome called: "Extreme Preemie Syndrome" or EPS!

Kaitlyn's issues have never fit nicely into any of the standard "named syndromes" ie: Autism Spectrum disorder, Pervasive Development Delay, Sensory Processing Disorder....etc.

My gut has told me for quite some time that something with Kaitlyn just isn't right. I've been always on the look out for what type of "syndrome" can I call it so that she can get the help she needs.

Maybe I've been looking for something that doesn't exist.

This weekend was particularly exhausting, because when Kaitlyn is in a busy environment (think Christmas parties) she goes absolutely bonkers and so does mom trying to reign her in. She rolls around on the floor, bounces off everything, can't listen, can't pay attention, can't do anything. it's really, really, really hard to control her. I'm also "tired" of everyone saying, "oh, waht a miracle she is, she looks so great." grr. why does that annoy me so much. Yes it's true, she's come a long ways, but why do I always feel I have to explain all the things that aren't just right.

I wish I could say, oh, she has EPS she weighed 1.5 pounds at birth and everyone would say, "oh" and leave it at that.

Being a parent of a preemie, you are often told by doctors, family and friends that "oh, preemies catch up by age 2."

This can be said for preemies of later term gestation, (like my son Quinn) NOT for micro preemies. Surviving Micro preemies are fairly new. Children born as early as our children were born did not survive all that many years ago.

Kaitlyn, like many other Micro Preemies isn't going to "catch up" by age 2 or 3 or maybe never for that matter. This breaks my heart. It leaves a huge open gaping hole in my soul.

There has been a recent thread of conversation on my micro preemie support group about long-term issues related to prematurity that don't "fit" any other syndromes.

I never really thought of ALL of Kaitlyn's issues being directly related to prematurity.... well that doesn't come across right, as I know her issues are all related to her being born so early, but I never considered that her issues are "unique" issues due to prematurity (and not other developmental issues), but they really are. The combination of her issues are directly related to her prematurity and they are the same as other micro children.

So often all of her therapists have told me: "Kaitlyn's issues are really different than any other of my clients." I had never really thought much about this statement until now. Kaitlyn is so strong (and advanced) in some areas but has many other issues that don't fit into any commonly diagnosed category.

There needs to be a newly formed label called: "Extreme Preemie Syndrome".

Our children missed out on major development (sensory, neurological, mental) when they should have been in the nice quiet womb of mom. Instead, they were subject to pain, torture, surgeries, loud noises, bright lights. Their little brains had so much growing to do, think of the size of a brain of a 1.5 Pound babies brain versus a full-term 8 pound babies brain? All that growth that was supposed to be done in utero NOT in a hospital.

I heard a mom once say to me, trying to explain their child:

"Think of it this way, you know when you need an electrician to work on the wiring in your house, but you get a plumber to do the work instead? So when you click your garage door opener, the lights on your house come on instead of the garage door opening. Our babies little systems just weren't wired correctly."

Here are some posts from my Micro Preemie Support group that got me thinking:


"P was diagnosed with PDD-NOS when she was 4 (maybe 3-it was so many years ago that I can't remember now). I accepted the diagnosis at first (knowing clearly that she was so different than other kids) but eventually fought to have it removed as she got older. Although she is VERY different than other kids, she no longer fit the PDD criteria. I still feel, to this day, that there needs to be another name for the uniqueness of our former preemies. Call it preemie syndrome, or whatever, but call it something. Many of our kiddos share the traits that make them unique yet the traits do not fit neatly on a form in order to accurately diagnose. The bottom line is though, getting a diagnosis can be very helpful in acquiring services in the public school setting.

P is happy at times. She has mental health issues so her happiness does depend on her meds. That may sound horrible but I've come to completely accept that she will need the meds. She has an anxiety disorder and pretty severe OCD-both of which are virtually completely controlled by her current meds.

As for the teasing... yes she was teased. The teasing was hard enough for all of us to handle but it what was worse (in my opinion) was how she was ignored by other kids. They simply refused to play with her. Her kindly teach told us it was because she was so smart and had an accent. But it never got better.

Her sensory issues made it difficult for her. If someone would slightly bump into her (as kids do) she would start yelling that they hit her. She also has a huge problem with tattling. She is a literal child and never can understand that there are gray areas. Black and white only with her.
It got so bad that I watched my precious child slip into a dark place. She couldn't understand why the kids didn't like her and was never able to grasp the concept of friendships. We ended up taking her out of public school and now home school. She is doing much better now.

I'll never forget when I first joined the on line list for parents of school aged (5 and older) kids. There I was in a place reading about lots of kids with traits that I thought were unique to Paige. I cried for days. I don't think it was because I was sad but more because I thought we had failed her in some way and that's why she was turning out to be so different. But, in reality, she was a lot like other preemies.

Hang in there Liz. Kaitlyn's uniqueness will become even more apparent as Quin gets older. I find myself constantly amazed at the things that T (Stacye's 2nd child: a late-term preemie son)can do, when in reality they are probably normal. lol"

And from Anne:

"I completely agree Stacey that there should be something called Preemie Syndrome.

When E was getting close to being discharged from the NICU, her neonatologist was talking with me one afternoon and said (warned?) that while E had "escaped" the more obvious signs of being extremely premature, like vision loss, hearing loss, major breathing issues, etc. that I should always be mindful that no child fully escapes the effects of her extreme prematurity, that it is simply impossible to have missed an entire trimester of gestational development and walk away totally unscathed.

He said that some children may have minor problems that are masked by more typical differences (some kids will never be athletic for example so you might not notice a minor physical limitation) but others have more obvious issues like feeding, sensory, behavioral, etc. that can not be explained away by the usual labels.

This particular neo thought the whole notion of "catching up by two" was a load of crap and as those of us with kids over the age two know, it is crap. He was an older guy who you would have expected to tow the traditional NICU party-line so to speak, but he was pretty progressive in his thinking.

Not to long ago I was talking with this neo (I live 100 yards from the NICU so often run into these folks in the neighborhood) about E's feeding and sensory problems and he asked me if my family/friends/acquaintances say or imply that E has these problems because of something I have done or failed to do. I realized that people do assume there is something I could do differently or should have done differently to prevent the feeding and sensory problems and thought about the comments I have heard: I gave her solids too early; I gave her solids too late; I had the wrong spoon; I wasn't persistent enough; I should have made my own baby food and on and on. So I told this to the neo and he looked at me and smiled said something to the effect of "if E had lost her sight to ROP would anyone have been saying there was something you could have done to prevent it or restore her sight? No one would suggest you could prevent or fix something like that but people do choose to believe that you can prevent or fix feeding and sensory disorders with some magic parental bullet."

We talked for a good while about how the medical community and society forget that there are unseen effects from the NICU which are just as life altering as the more obvious problems yet research to prevent these problems is underfunded or non-existent since society really could give a rat's ass about the problems these kids have. So maybe this neo and I are crazy. Maybe I just have a soft spot for him because after 3 months of pumping every 3 hours with meager results he told me it was OK to put the pump away and have a nice glass of wine and that I was still a good mother even if I couldn't produce any milk."

Thank you Stacey and Anne. You make me happy to have you as friends!

Let's get on the band-wagon to start a new label: "Extreme Preemie Syndrome" EPS!

And you blog readers, please help! Help educate your own NICU docs. Your own school districts. Let's get studies funded. Our micros aren't an experiment. Our kids our suffering and we as parents are tired of fighting to get them help.

Wednesday, December 24, 2008

Merry Christmas 2008

Here is Kaitlyn and Quinn at Friday's night party at our Community Center. Kaitlyn (our non-eater) had no interest in looking at the camera (or Santa) as she was too busy devouring her candy cane!

Here is my online version of my Christmas Letter this year:

Happy Holidays 2008! Dear Family and Friends,

It’s been a very busy year. We never got the chance to send out an official announcement, but we are very proud to announce that Quinn Edward McCarthy was born on July 21, 2008. He weighed 4 pounds 14 ounces, was born 6 weeks early and spent 3 weeks in the NICU. He was just small at birth and needed to learn to eat on his own before he could come home to his big sister! Mom spent 6 weeks on bedrest, 3 of them in the hospital, but today, at 5 months Quinn is doing great. He is suffering from some likely preemie related Reflux (pain while eating) so feeding him can be a bit trying at times, but all-in-all, he’s doing just great!

Quinn now weighs about 12 pounds, is smiling all the time and is a wonderful baby (when he’s not crying from eating!) He loves to watch his Big Sister, and Big Sister could care less about her Baby Brother.

Kaitlyn turned 3 years old on October 4th! The biggest news for Kaitlyn is that we were able to remove her feeding tube a month ago and she isn't vomiting any more! She hasn’t been fed via feeding tube since May, but sadly she hasn’t gained a lot of weight either. She now weighs just 26 pounds (she weighed 24 pounds Christmas 2007). When she wants to eat, she loves it, but still doesn’t eat very much (or often). Every month her eating improves, and it’s a joy to see her devour cupcakes and french fries! Every moms dream! J

Kaitlyn started mainstream preschool in September, but it was determined that she has a lot of developmental delays in which she could be better served by a “Developmental Preschool.” This is a special education program through our school district. She is now going to special school 5 days a week, but she gets to ride the bus, which of course Kaitlyn just loves. Unfortunately, it looks like Kaitlyn is going to be affected by her prematurity for many years to come. She is doing very well in many areas, but is quite behind in others. We are hoping that this program is going to help her be able to better handle Kindergarten when she turns 6. (We will be keeping her behind a year).

As always, you can keep up with Kaitlyn and Quinn on our blog: We will be spending Christmas in Los Angeles with Liz’s family this year. Kaitlyn is very excited to have Santa Claus come visit. Seeing Christmas through her eyes is the most joyous thing and we can’t wait for Santa’s arrival. We went to Disneyland over Thanksgiving and Kaitlyn had a great time! (This year, I’m sorry to say, I just don’t have the time to write little notes on each of your cards in interest of just getting them out!) ~~~~ With lots of love, peace and happiness,

The McCarthys: Brian, Liz, Kaitlyn, Quinn & dearly missed Angel Corinne

Monday, December 22, 2008

Yes, I do have to work for a living...

OK, I don't normally blog about my job, but I'm not in a good mood so here it is...

Yes I sell houses for a living. I'm a Real Estate Broker. and I primarily sell real estate in Marin and San Francisco. (Realtors don't seem to have very good reputations, so hopefully you've gotten to know the real me and know that I normally LOVE what I do, as I get to make people happy). My clients often give me gifts after I help them close escrow. That makes me feel really good, to know that I've made a difference in their lives.

In the last 3 days, I found out that 2 friends purchased homes with other agents. Expensive houses! One of them was a really, really expensive home. If I had been their Realtor that income could have made a HUGE difference to my family. HUGE.

A few months ago another client didn't relist their house with me because I "just had a baby" even though I closed 3 other escrows within 2 months of having Quinn. I had received an offer in on their house for $50,000 MORE than the relisted the house for a year later, saying to me after they listed it that they "didn't want to bother me as I just had a baby", and this was after they give me a baby gift! Ugggghhh.

With having to be on bedrest again, having a new baby, and the market downturn, things are a bit tough financially at the moment for us. If I had closed those additional 3 houses this year, it would have made a big difference in our life. I never really push the fact of what I do for a living....maybe I should more? I'm not the pushy, salesy type.

We purchased our house when I was pregnant with twins, desperate for a place to live as our landlord didn't give us much notice. We bought it at the height of the market (7 offers on my house) and it's now worth less than what we paid for it. Our loan resets in a bit over a year. We can't refinance due to the amount of equity in the house. My husband's salary as a fireman doesn't cover our mortgage as it is today, let alone once the loan resets. Our house is too small for 2 children. We love our neighborhood, but hate our house. We are at a loss as to what we should do.

I'm really letting it all out there saying this publicly, but you know what? Life's tough at the moment, and hearing that I could have made some decent money was really quite upsetting. It burns a hole in my heart.

Then on top of it, a client of mine, a first time home buyer that I had in escrow (which has kept me running around the last 2 weeks (and all weekend) right before Christmas) decided to cancel his escrow last night. So I could have been doing my Christmas cards, I could have done a million things, but instead I did a ton of work for naught (granted that's my job which is OK, BUT the hearing the other sales that I didn't get has just set me over the edge).

How can you help? Yes you can help me!

So, to all those blog readers out there, especially the ones that live in the Bay Area....please if you know of anyone looking to buy or sell a house PLEASE, PLEASE think of me! I'm good at what I do. really! You KNOW me personally because of my blog, but if you want to know how I "work", here's a link to what my clients say about their experiences in working with me: What Liz's Client's say.

And if you don't live in the Bay Area, did you know that I can refer agents to help you anywhere in the country and I get a referral fee? Please let me help you find an agent wherever you live! It would mean a lot to me. Please email me here or visit my Marin Real Estate website.

Here's a Realtor Christmas video that I just came across that at least fit exactly how I've felt all weekend long:

Monday, December 15, 2008

ugh insurance

I was just told today by my pediatrician that the reflux med I mentioned in my last post isn't covered by our formulary (the RX list that Insurance companies use).

Once again, nothing is easy is it?

Oh and Kaitlyn LOVED the bus today! I met a mom who just loved the school/classroom/teacher so I'm feeling a bit better about my decision to send Kaitlyn to special school. I'll get to meet more of the moms on Friday for the Holiday party.

Great reflux tips

I forgot about this website, it's a great resource for reflux, doing some research I discovered that maybe we weren't dosing Kaitlyn enough on her reflux meds and the fact that she probably wasn't getting much of the medicine (in solutab form).

I had always heard that Zantac rarely really works for reflux for kids...

Here is some REALLY great Reflux info that I wish I had read more about with Kaitlyn: Thought I'd share. All of this info is from the following website:

1. Regarding h2 blockers (meds like Zantac):
"Tolerance to H2 blockers can occur with prolonged administration; that is, the medication will no longer inhibit acid production, even if the dose is increased. Although your child may feel better at first, the symptoms will often return within one or two weeks, even after increasing the dosage.:

Regarding PPI's (Prevacid, Prilosec)::
Proton pump inhibitors (PPIs) are chemical compounds that irreversibly inactivate the pumps that produce stomach acid.

1.Zegerid powder for oral suspension is the only commercially available immediate-release suspension that is FDA-approved. It is helpful for pediatric use because it is a true suspension that contains no enteric-coated granules that are difficult for young children to ingest. Parents therefore don’t have to worry about their child chewing the granules, which would expose the PPI to stomach acid and reduce the effectiveness of the drug.

2. H2 blockers will prevent PPIs from working if they are taken too close together. For this reason, H2 blockers should not be given within 4 hours of giving a PPI.In-depth look: PPIs work by directly inactivating the acid- producing pumps in the parietal cells, but they can only have this effect if the pumps are actively secreting acid. Because H2 blockers prevent the activation of pumps, they can actually inhibit the ability of a PPI medication to have its effect when they are given at the same time (together). However, giving a PPI in the morning and at midday and then an H2 blocker at bedtime can allow these two classes of medicines to work together (since they are not in the bloodstream/body at the same time).

3. PPIs are often under-dosed in children (see PPI Dosing Information). Because it has been found that children metabolize PPIs more quickly than adults, we recommended administering them 3 times a day for children under 2 years old.

4. If you are currently giving your child a compounded suspension of a PPI such as Prevacid made by a pharmacy, you should know that there is a good potential for the medication to become inactive (and therefore ineffective) in a much shorter time period than your pharmacist may be aware. The loss of activity is related to the effect of the flavorings added by the pharmacies. The flavorings cause the PPI to become unstable and break down so it can no longer inhibit acid secretion. Laboratory testing has shown that the majority of such compounded, flavored preparations become inactive within a week.

In addition, many pharmacies do not add enough buffer in their suspensions to protect the drug from degradation by stomach acid. This is particularly a problem if the child is receiving a very low-volume dose—less than 3 mL, for example—because the amount of buffer likely won't be enough to protect the PPI from degradation by stomach acid.

5. PPI drugs have an effect on the production of acid that is related to the amount of drug that is absorbed into the body. This amount of drug is known as the AUC or area under the curve. So, when planning out a drug regimen with a PPI drug, the best thing to do is to try to achieve the AUC that is known to inhibit enough acid in 24 hrs to reduce damage and reduce symptoms. In other words, you have to give enough PPI--and frequently enough--to get the desired effect. If a PPI is underdosed, the child will continue to suffer from acid reflux and the symptoms may be misdiagnosed. The most revered author in the treatment of reflux in children states in his excellent recent review, “...the most common error in PPI prescribing in children is underdosing. In fact, if the diagnosis in a child is GERD, and there is poor response to PPI, the likely problem is either that an insufficient dose has been used or that the patient is not taking the medication.” -Eric Hassall*

6. Is it possible to give too much PPI?The short answer is no. Fortunately, PPI drugs are very specific in where they work in the body. They are only active in a very specific place – that is the acid secreting cell, parietal cell. Since PPI drugs only work on the acid secreting cell the chance of side effects is very, very low–even if you give 3 times more than your child needs. In fact, PPI drugs are known as prodrugs because they are not active as they pass from the bloodstream to the acid secreting cell. PPIs become active only when they pass into the acid secreting portion of the acid secreting cell, where the pH drops to about 1.

The Marci-kids website has a great dosing calculator on their dosing chart

Sunday, December 14, 2008

What's a normal baby anyway?

OK, i'm a horrible mom.

I've just thought that babies are a bit difficult to feed and fussy and etc. etc....But after now paying "attention" I realize that Quinn has reflux.
I feel horrible that I've let it go for so long. I didn't know! I don't know how to feed a baby. Remember that Kaitlyn was 100% tube fed.

I'm stressed, I'm tired. We've just tried 2 weeks on Zantac, with a bit of improvement, but short-lived relief and now I'm stressed out from my upset little guy. We need to get him on a PPI (like prevacid that Kaitlyn used to be on). It's not like he cries all the time, it's not like he refuses the bottle (signs that I would have looked for).

But here's what Quinn's been doing:

  • Snacks all day long, as opposed to taking a larger volume at once (he’s learned that if he eats a lot it hurts)
  • He is VERY gassy and Is very difficult to burp which has even gotten harder in the last few weeks (he’s now 4 months, which is when reflux can get worse)
  • Is crying a lot, especially when needing to burp (which is often as it’s so hard to get him to burp and he snacks)
  • Cries after burp for about 20-40 seconds then quiets down I think he’s learned that burping hurts him (refluxing)
  • Is not stretching out how long he sleeps at night (as he’s not eating large quantities at a time) and he’s hungry
  • he arches and gets very stiff while eating, which is when he’s really upset
  • At night he can go 1-2 hours straight where he doesn’t go back to sleep as he’s fussing/upset/needs to burp, wont' eat, wants to eat, (and I’m exhausted)
  • He spits up a lot

I think with what's going on with Quinn and dealing with Kaitlyn - I'm not able to get much done in my life. I finally just sent out Quinn thank you cards, and now need to tackle Kaitlyn's thank-you cards from her birthday party (from October) - Christmas Cards???? I always send them out...I want too, we'll see if I get to it. My house is a wreck. I never have time to eat or even drink a glass of water.

When the kids are finally asleep (around 9ish - I seem to have 2 hours or so of peace and quiet, and maybe finally eat something, before I pump and deal with all the night-time readiness before Quinn eats again at midnight (he has a major internal clock and seems to wake up to the minute of 3 hours). its hard to do any of the things that I really need to do at that time, I'm just so exhausted, mentally and phsyciall that all I want to do is veg in front of the tv and watch my tivo'd programs.

Can I tell you how tired I am of breast pumping? Ugggh. I did it for 8 months last time around. I'm going on 5 months now and have about had it. Before I stop this time though I have to do a trial of formula with Quinn to see if he can tolerate it. I don't want to have happen what happened last time, knowing that I had a freezer full of milk and not worrying. I didn't know that she wouldn't' be able to tolerate formula at all and I had to get donated breast milk after my extensive freezer stash ran out.

(It's 10pm now, I'm pumping and blogging, trying to go to sleep an hour earlier due to the K's new schedule for tomorrow):

Kaitlyn's first day on the short bus is tomorrow. I'm sad. We delayed a week due to her being sick.

Last week we went to check it out, and I really am having some major anxiety over this. Am I making the right decision? I so love her school that she's in. The kids in her new school have some very clear disability. Will she be able to get role models? hard to know as she now doesn't interact with the kids in her school anywyas and the teachers just let her be by herself (a star student really but not social at all).

It's going to be EARLY and very tough in the mornings. Normally Kaitlyn wakes up at 8:30ish and now the bus will be picking her up at 8:30! Sheesh. With needing an hour before we feed her after giving her periactin, my having to pump for 35+ minutes in the morning and dealing with a fussy/refluxy baby. I'm not looking forward to my alarm going off. (I'm still up every 2-3 hours at night with Quinn too!)

Oh, and a side-note from this weekend, Brian's fire house had a Christmas celebration for the kids of the fireman, We went to SF and got to see Santa arrive on a giant San Francisco Fire Truck. Kaitlyn loved it!

Monday, December 08, 2008

Happy Meal!

It's now 2 weeks post Thanksgiving, and I still haven't posted a Thanksgiving update!
I'm from the Los Angeles area originally so we drove down as a family. This was my 2nd drive to LA in 2 months, and we are going again for Christmas. I guess I'm making up for lost time, as with Kaitlyn's feeding/vomiting issues before, driving was a nightmare.

Now we can stop and get her a happy meal! Wow. That's such a crazy (stupid) big deal for me. I wanted to be one of those parents who fed their kids the healthiest of food. Now I'm rejoicing about Happy Meals! Isn't life ironic?

We had a lovely Thanksgiving. This year Kaitlyn got to actually EAT dinner, as opposed to my putting it in a blender and giving it to her via feeding tube! She loved the pumpkin pie, that seemed to be her favorite. Turkey is still a bit tough (as is any meat) as it takes forever for her to chew it. She's still working on the whole chewing thing.

The funniest thing that I'm finding with a child that eats, is that I'm forgetting what a night-mare my life was just months ago. It's starting to feel a lot more what motherhood should be like (I think? as I don't know what "normal" mother hood is). It wasn't all that long ago that I posted my plea for help with Kaitlyn's vomiting. I don't know when she last vomited. It's really, really weird how easy it is to forget.

Good-news on Kaitlyn's Tubey-tube site: It's closing very nicely, She is NOT going to need surgery to close the site! Hooray!

Our big news to report:
We went to Disneyland on Saturday after thanksgiving and of course I cried. This was something I had imagined from the moment I got pregnant finally with IVF. I so wanted to be a mom. Now here I was with my miracle little girl watching it all through her eyes. This is what motherhood is all about to me. Watching the little things trough a child's eyes.

I wasn't exactly sure how Kaitlyn would handle it, it's a lot of overwhelming stimulation, but she did really, really well. Of course she didn't nap and it was a very long day, but all in all, I'm so glad we went. She wasn't all that excited over the characters (she was more interested in mickey's nose for example and Tinkerbell's tights then the character themselves) but I had so much fun watching her!

Of course Brian caught a bit of it on video, we'll see if I can edit it and post it. (my tears at watching Kaitlyn)

Brian and I got an amazing night away on Saturday! This is the first time we spent away from children since we went to the Dominican Republic about a year after the twins were born. It was much too quick, but it was nice to get a night of sleep! It was for Brian's SFFD Station Christmas party up in Sonoma. Wish it was a full 24 hours away! Oh well.

Here are some pictures from Disneyland and over the last few busy weeks:

Thanksgiving at my mothers house (Rich (my step-dad) my mom Corinne, Kaitlyn, me, Brian, my brother Gary and his girlfriend Jamye.

A local moms group (Ross Valley Mothers Club) Christmas party this Saturday, decorating an ornament.

Eating Pumpin pie on Thanksgiving with Grandma Corinne

RVMC Christmas party (sadly, when Kaitlyn smiles for the camera, it looks more like a grimmace!)

Kaitlyn actually EATING her christmas cookie after decorating this year! (Last year mom got to eat them all!)
Quinn's getting big!

Katilyn had to get back in her bumbo seat!

Kaitlyn and dad at dad's hockey game (San Francisco Fire Department hockey team)

Grandma Corinne and Quinn

Kaitlyn intently watching the Disneyland Christmas parade

Brian and Liz out for Brian's SFFD Station party in Sonoma

Kaitlyn and Tinkerbell

Upon arrival at Disneyland, mom, Dad, Kaitlyn and Minnie Mouse! (K wouldn't let go of the entrance tickets, she's much more interested in the tickets than in Minnie Mouse!)

Kaitlyn, mom, Uncle Gary and Jayme on Mainstreet, decorated for Christmas!

with Goofy!

Uncle Gary and Liz in front of the Matterhorn

Dad and Kaitlyn on the old-school fire engine (K still has her tickets)

Dad and Kaitlyn on Autopia

The Tinkerbell grotto (it was VERY hard to get K to settle down for a picture)

a few days ago on our street. Kaitlyn has had this used Barbie jeep for quite some time now, but it wasn't until our neighors son (Stephan) started driving it that Kaitlyn became interested.

Thursday, December 04, 2008

RSV and Synagis

Kaitlyn is Sick AGAIN. This is the 2nd time in a month. They always go into her lungs and she gets a horrible cough. Of course I seem to have caught it again too. sigh....Poor thing, she has had horrible poops since she was last on antibiotics and has pooped 5 times every day. Her little bottom is raw and red, oh her tears break my heart!

This was to be her last week at school and she can't even go! I'm so sad, I wanted there to be some completion for her as to her last day, now she won't even get to say good-bye to the other kids/teachers. Makes me sad!

This is Kaitlyn's first winter without getting Synagis (palivizumab ), which is not a vaccination but a prophylaxis which can lessen the severity of RSV.

Synagis is incredibly expensive. Depending upon the weight of the baby, it's anywhere from $1,000 - over $3,000 a month! Yes a month!

Although I can’t believe it, our insurance has approved Synagis for Quinn! Yes he is a preemie and he has mild BPD (bronchopulmonary dysplasia) due to his lung issues while he was in the NICU. I’m actually really relieved that he’s going to get Synagis, as even healthy babies can get RSV and it can be deadly. It’s a horrible virus. Babies with preschool age children at home are more at risk. For those readers who weren’t aware of RSV, be careful!. Wash your hands as much as possible. RSV season is upon us again. (more on RSV below).

Quinn got his first shot last month and is going in for his 2nd shot tomorrow. The bummer is that I have to subject him to a monthly shot. Poor little guy. As he was crying hysterically in my arms all I could think of was all that Kaitlyn had been through and I wanted to tell him, “hey little man, this is nothing compared to what your sister’s been through.” But I can’t tell him that and I can’t treat him that way in the future either. I'll have to remember that.

Here are some RSV facts from the CDC website on RSV:

-Almost all children will be infected with RSV by their second birthday.
-RSV causes respiratory illness in infants and young children, and is the most important cause of bronchiolitis.

-When infants and children are exposed to RSV for the first time, 25% to 40% of them have signs or symptoms of bronchiolitis or pneumonia, and 0.5% to 2% will require hospitalization. Most children hospitalized for RSV infection are under 6 months of age.

-Infants and children infected with RSV usually show symptoms within 4 to 6 days of infection.

-Most will recover in 1 to 2 weeks. However, even after recovery, infants and children can continue to spread the virus for 1 to 3 weeks.

-In the U.S., RSV infections generally occur during fall, winter, and early spring.

Tuesday, December 02, 2008

The short bus

I've been putting off writing this post now for over a month.

Maybe it's because putting it off delays the inevitable. But I guess I can't hide the truth any more.

Kaitlyn will be riding the short bus to school soon. Now I don't mean this as derogatory or anything. It's funny, our community school district has these smaller busses that take kids to and from special needs school and it wasn't until recently that I actually realized that these were the "short bus" that are so crudely spoken of by others when "jesting" about special needs children.

My daughter is a special needs child.

As she gets older and I compare her to other 3 years olds it's been slowly more and more obvious to me how delayed she is.

Let me back up a bit.

A number of weeks ago I asked the teacher for one of Kaitlyn's new Pragmatic Speech programs if she had some time as I'd like to talk to her now that Kaitlyn had been in her class for a month. She actually said to me that she'd been wanting to meet with me also.

Briefly, she indicated that there was a lot more going on with Kaitlyn than was orignally diagnosed by the district. She tested so well in a quiet one-on-one environemnt, but after a month of watching her, the teacher noted many delays in many areas.

  • Gross Motor delays
  • Fine Motor delays
  • Flirting from object to object/inability to be still
  • Not looking at eyes
  • Gets super wound up if the envromnent is hectic (this is probably the HARDEST of all the issues to deal with)
  • Prefers adults to her peers/doesn't interact with other children
  • clumsy/stumbles
  • Shutter-steps her feet
  • Repeating words over and over even though she has ability to speak sentences
  • Hyper focusing on objects for long periods of time
  • High pain tolerance
  • Seeks out stimulation from objects (ie rolling on floor, couches)/ flops

The teacher said "I know Kaitlyn is really bright and excels in a lot of areas, but her delays do not allow her to show how smart she is".

Strangely, I felt some happiness as I felt validated finally that my "gut feelings" that I've been writing about weren't off. But I also felt really sad that I wasn't just being a "worry-wort" parent.

After I left, my mood totally tanked. No more happiness. Here are some of my feeling-sorry-for-myself rantings, but once again, I felt like my daughter was never going to be able to escape the horrible affects from her extreme prematurity. From my having an amnio. Yes, there's that fact. Now, don't get me wrong, I don't carry this horrible guilt with me. But I look at that event as "THE EVENT". My daughters are forever paying the price of that event.

I shouldn't be complaining. She is so much better off than other micro preemies I know. She's so much better off than so many of my new (new since my life changed forever) friend's disabled children.

But, damn it, I feel sorry for her and I feel sorry for myself. This sucks.

The teacher felt that Kaitlyn would do much better in a developmental preschool 5 days a week and that she should no longer be in main-stream preschool. I asked if she couldn't just go to her regular school 1 day a week. The teacher really indicated that the best way for Kaitlyn to improve would be consistency, 5 days a week with the same children, same teachers, who were really focused on her delays.

I know that the 2 day a week 1.5 hour speach programatic proram that she's in now is really good for her. My instict told me that this teacher was right on. She told met hat she's known in the district for doing a really good job of assessing children to help them get the care they need.

Yes, I'm happy that these issues are going to be addressed now. I feel very fortunate that I"m we are in an excellent school district with goals of helping our children enter main stream school at some point. This wasmy goal all along - to get her the help now as she's still young. But I'm still sad.

I was so sad to tell my preschool. This morning when I dropped her off I felt sad again. I really like my community preschool. I've bonded with a lot of moms there. (one has a special needs son who I've become really close with). Now my daughter will be riding the short bus.