Thursday, April 30, 2009

Wow - my daughter is amazing!

Sorry for my delays in posting as of late. With my March of Dimes commitments, being super busy with new Real Estate clients and Listings, Kaitlyn’s sickness for 3 weeks last month I’ve been up to midnight every night trying to get work done - blogging just fell off my urgent to-do list.

OH and by the way, I may have mentioned it in the past, but I’ve been worried about Quinn’s lack of a lot of things, and he is now officially 3 months (12 weeks) delayed. He was only 6 weeks early, so he is quite delayed. Sigh. He’s not eating solids well. Sigh. Will have to update more on that later. He’s doing what 6 month old babies are doing (just learning to sit-up for example). Thankfully he finally is sleeping through the night!!!

But on to an up-beat post -

Kaitlyn has been thriving lately! I can honestly say that the alternative therapy that we’ve been doing for her is really, really working. I have an amazing, wonderful little girl on my hands, and to be honest, for the first time EVER I feel like she is emerging from the strange little world that she was living in and coming out to be this wonderful, intelligent, and amazing girl.

There have been so many times that I’ve teared up, just watching her. Here are some examples:

I caught her playing with her dollhouse one day. She put one of the dolls on a bed and covered it up with a rug (that she was using as a blanket). She said “good-night” to the doll and then started talking as if the dolls were talking. I stood there absolutely enraptured by this. She’s never done anything like this before. “mommy wants you to go to bed now” “here’s a blanket to tuck you in” Oh my goodness, tears sprang to my eyes. I was holding Quinn at the moment, and just stood and stared and was taken over by the most amazing emotion. Do all parents feel this way?

For me it was elation that she is finally starting to pretend play (at age 3.5 which is very delayed). It was so dang cute.

Another example, she is eating up a storm and she’s up to 28+ pounds!! Yippee! Here it took almost a year to go from 26 to 27 pounds. She lost that pound in 3 days when she was sick and quickly gained it back and then some and weights over 28 pounds now. It was practically overnight! Kaitlyn loves spoonfuls of sour cream, straight butter, broccoli “trees” loaded with sour cream, It’s SUCH a joy to watch her.

Some days Brian and I watch her while we are eating a “family dinner” together and we say quietly, “oh my god” while we watch her scooping up food and feeding herself. Now some days, she won’t eat much at all, but other days she makes up for it (finally like a regular toddler).

My strategy of stopping the “pushing” has finally paid off. I has also reinstated Periactin (which is an antihistamine with a side-effect of increasing appetite). Before we loved the drug as it was finally what made Kaitlyn stop vomiting. I stopped it awhile ago when we realized finally she stopped vomiting with out drugs. But I do now cycle her on and off it which I do believe enhances her appetite.

She smiles all the time now. My mom commented when she was just up for the March of Dimes walk that she’s never seen Kaitlyn happy before. Maybe with a 2 day visit she’d smile a few times. But now she smiles, giggles, laughs and makes little jokes all the time. She has quite a sense of humor that’s come out.

Her talking has also increased. Before she used to repeat a lot of what she’s heard, sort of verbatim. Now she says random things on her own. For Example, when we were coloring Easter eggs, she said: “Wow, this is a really beautiful egg.” Brian and I smiled at each other as this was such a new statement from her. She now speaks in complete sentences most of the time (where before it was a lot of one word sentences). She says some of the cutest, most amazing things. It makes me smile all the time.

Sometimes I even see advancements in her from week-to-week.

Some other things I’ve noticed:
-Kaitlyn doesn’t fall down as much. She isn’t as awkward when she runs. She doesn’t always have to have a thing in each of her hands.

Our Therapist (Boutaina Rosen) in the Svetlanta Mustgova method started giving Kaitlyn treatments 2x a week and that’s when things really took off. Before I wasn’t really sure I could attribute the changes in her to seeing this therapist. After we started 2 x a week, it was like a light bulb went off in side Kaitlyn.

And once I started realizing how different she was, I for the first time since she was born way too early starting feeling some relief. That she really is going to be ok.

I know some of my readers have felt that I’m negative. That I worry too much.

All I know is that my gut instinct has always told me that something just wasn’t right with Kaitlyn. I hated this feeling that I got all the time. And the worry that went along with it. For me, it was this feeling that has continued to make me reach out to try to find ways to help her.

For the first time since the twins were born I’ve become filled with the joy of being a mother to an amazing wonderful joyfull little girl. I hate that it’s taken me so long to not feel the constant worry about her future. I know that readers have commented on my negativity. But there’s a reason she is in Special Education 5 days aweek. Her teachers noticed her differences also.

Of course I still get doses of that we not out of the woods yet so to say.

I enrolled Kaitlyn in a 30 minute ballet class, and her first day was yesterday. Kaitlyn was the only one that was running around the room in circles (with a HUGE grin on her face) while all the other girls were following directions. She also spent time crawling on the floor on all fours and flopping around the floor. So the worry crept right back again. But at least you could certainly tell that she was absolutely joy-filled at her ballet class. I took some cute video that I hope to get around to processing and posting.


Beverly said...

I just saw a family with three 3-year-old micro-preemies that has a GREAT video in a national TLC/Ragu contest. They need the most daily votes per computer to win a Disney cruise and get their video on The Discovery Channel. You should really check it out and direct your readers to it at . Theirs is the one on the left!

Michele said...

Yay, yay, yay!!! Has she finally reached a new phase where she is "starting" to outgrow her prematurity?! I am so happy for you guys!
Saw the pics of the walk...looks like you had a great time and woo hoo...awesome fundraising!

Crystal Darnell said...

It is great to hear of all your daughters accomplishment. As the parent of a 23 weeker I completely understand that "constant worry" you speak of. I am always worried that something isn't exactly right with my son Colton. He is only 17 months old but he is severely delayed. His developmental level is that of a 6-9 month old.

Zack's Mom said...

I read your post hoping that I can post things like this some day. Periactin doesn't seem to be working for fact it seems to make the mucous worse and he is eating less. Only MY kid...*sigh* I'm so happy to read about K's progress. It's an inspiration. Thank you.

BusyLizzyMom said...

Glad to hear things are going well. Elizabeth at about the same age seemed to even out in areas that we were quite concerned with. There will always be that worry as I watch her with her peers and see her delays but like you I am a mom of a microprem and worry will never end. It sounds like the therapy you are doing was right for Kaitlyn and you had found it at a good time.

skeybunny said...

Hi Liz,

Can you post more information on the Svetlana Method...I'm interested in learning more about the therapy.

Sarah (mom to Evan)

Anthony's Mommy said...

I am also interested in this therapy. Anthony seems to be quiet behind on speech. Besides that we have been lucky. I did some research and found a book on this therapy. Its $65 do you think its worth the cost? Is it something I can do myself? I would love to help Anthony out since his speech therapist didn't do a damn thing!


Anonymous said...

Hi Liz,

I don't post much but I've been reading your blog forever and I'm a member of the micropreemie mom group for my sons Sammy and Stevie. I just want to tell you that I've been meaning to say for a while that you are my hero. You went through one of the most difficult pregnancies I ever heard of, what with the heartbreaking attempts to patch the amnio leak, you lost a child, you had a daughter with severe needs, and you turned it all into a positive thing by starting this group and making a place for everyone to come together. I never thought you were negative. I thought you were HONEST. I wanted to post back when people were accusing you of being negative but I never did. I wanted to say, get real people, this is reality -- plus Liz is going through a LOT of sleep deprivation right now (when Quinn was younger) and that affects a mom's perspective profoundly. I've had severe worries about my son Sammy (who is 4, went through NEC surgery and esophogus surgery and being fed by a NG tube for 4 months after leaving the NICU), and I have lived to see the joy of watching him improve and grow and now he tests normally for his age in everything except motor skills (he has mild CP), and he and his twin are even more advanced than their age in verbal and reasoning and memory skills. I remember the day I told him to "go to the blue ball" and he crawled over to it and I cried, wept, sobbed because I realized he UNDERSTOOD. And since then I do marvel at all the things they do that are just like other kids. It is all a miracle to me. I am so happy for you and your family. I think you are an amazing, energetic, intelligent, beautiful person who has made the world a better place. OH and one thing I do understand is just how awful it is when your child vomits a lot. My guys only threw up a little bit more than normal but I still found it so awful to take. For putting up with multiple vomits a day for YEARS you deserve some kind of medal. All we want to do is nourish and feed our children and when they throw up the meal we painstakingly put into them it is so heartbreaking. I can admit now that I actually got to the point where I would lose it, get angry, when they vomited. Oh, and get this, the woman I hired as their first nanny, who is a terrific person, a former first grade teacher, and who is now a good friend of mine, had a vomit phobia. She didn't tell me when I hired her, but after a few months she confessed that she would have absolute anxiety attacks when they threw up. But she was so great in other ways I couldn't fire her. And she took care of the boys well, realy stuck it out for a year because she knew we needed her (I had to go back to work full time after my maternity leave because I have a job with great medical coverage and my husband is self employed and we couldn't afford to pay medical insurance out of pocket). And it turned out to be a good thing for everybody because dealing with the boys made her confront her problem and get phobia therapy and it allowed her to have the courage to get pregnant (she had been afraid to have a baby because she was so terrified of morning sickness). So although it was an awful experience it helped us grow in good ways. As I remember my husband telling me when Sammy was small and I confessed I worried about my ability to love him and bond to him because all I did was worry about him -- "That boy will be your salvation." And he has been, and I love him and his brother infinitely. So I just want to say thanks again for all you do and for your companionship and inspiration in all this. Ricki G. (I can't remember my password so I'll just sign on as anonymous).

Anna said...

Hi Liz.

I am very happy for you that your daughter is doing so well. You are clearly giving her the right learning environment. Or it could be that she's just growing on her own, and she would have done so regardless of all the therapies (ever have that doubt?).
Anyway, I would just like to point out that worrying about eating at Quinn's age doesn't make much sense to me. I can see where you are coming from , but he is a different child than his sister. My youngest daughter is now 19 months old and a real piglet when it comes to eating: she eats everything from whole apples and carrots to pasta, to meat and vegetables. Well, she really did not eat much more than breast milk until she was 10 (ten!) months old. I would try, she just didn't want other foods. I wondered if it was because she put her baby teeth very late (and still has few than most babies her age). She crawled at 8-9 months, started walking at 15 months. She's perfectly on track with everything (speaks sentences in three languages). Perhaps your pediatrician is a little bit too focused on age milestones?

Shannon and Carey said...

Oh Liz,
What a wonderful post. I'm so glad that K is interacting more and pretend playing! Yippee! And yes, I do stand back and admire things these kids say (granted Porter is just now on to 2-3 word sentences and Abigail is getting ready to hit 4 words) But seriously, these tiny little people can TALK? I still think it's amazing they can do things like this. I don't take it for granted. And the weight gain? HELLO! Go Kaitlyn!
About Quinn: Keep us updated. I'll be thinkin' about you all.
-Shannon in Austin
PS: Would you like one of our Tshirts from the Austin walk coming up? I got 3. You can use it to lounge in while you eat bon bons. Like me, not.

Cristi said...

So happy for you.

Erin said...

My son Liam was born six weeks early, so your comments about your son Quinn (a name we considered for Liam!) strike home with me. Liam is now 3.5 months old and while he seems to be doing well, having a preemie has presented more parenting struggles than I thought, and for so long it has been a sort of lonely journey. I am so glad to finally start finding other people writing thoughtfully and honestly about their journeys as the parents of preemies. Thank you for sharing.