HIGH MAINTENANCE

Pitiful picture, I know. But this is what happens when she doesn't get what she wants. My sweet, peaceful little girl has become extremely high maintenance over the past week. She exhausts me! Ella is a rolling machine these days, problem is she still just rolls in the one direction so she keeps getting stuck, so literally every minute or so you have to go rescue her from wherever she is. Plus she still has the habit of while on her stomach slamming her face into the floor, so where does she try to roll to every time? The kitchen, where there is of course no carpet. So needless to say if Ella is on the floor you have to watch her every move. She was sitting up a lot better, and still is if you can make her sit still. Now instead of wanting to stand up from sitting she tries to throw herself forward so she can start rolling.

Eating is a whole other struggle, she has become a very distracted eater, and although she is hungry she just can't stop watching everything that is going on, mainly Hunter. When I feed her cereal she likes to stick her tongue out and spit, which Hunter comes over to watch because he thinks it's hilarious which then distracts Ella.

Now that all of our company is gone (we've had family visiting for 6 weeks) Ella is back in her room in her crib. She has been sleeping on her stomach now, and spits up a good bit. So, I attached one of those spit up sheets (the kind that tie on either side of the crib) so I wouldn't have to change the big sheet all the time. I went in yesterday to check on her during her nap and she had both of her arms stuck under it, so imagining in my mind her somehow getting her head stuck in there I took it out. Her next nap I tried just a lap pad, I went in to check on her and she was wrestling around with it and had it over her face. So I guess I'll just be changing the sheet everyday, good thing I have 4 of them!!

Even Ella's hair is high maintenance. All it wants to do is hang in her eyes, which it now goes down past her nose. So, countless times a day I am brushing it out of her eyes. When she is not on the floor playing or sleeping I put it in a little ponytail, but as soon as she starts moving around it comes out.

So, my Ella Grace is quite a bit of work these days. At night when it is just the two of us, and after I have wrestled her to sleep (I no longer consider it rocking her to sleep, you literally have to pin her arms down so she won't pull her pacifier out of her mouth), I sit and stare at her. So peaceful when she sleeps. Though I am wore out, I actually love that she is such a handful!! She has come so far from the tiny baby I brought home who we didn't even know if she could actually cry. I love that she is a mover and can't sit still for one minute, even in her sleep. And I especially love her attitude, and it's a big one. She knows what she wants and when she wants it. My husband said, "well maybe she figured out she really is a princess."

The above picture is after Ella's bath last night and I had just set her in the exersaucer, which apparently she did not want to be in. Even though she has quite a temper she is also very quick to give smiles. All it takes is me saying her name in a sweet voice and this is what I get. For a second anyway.

YAY ELLA!!!!

Ella has figured out how to roll!!! She has known how to roll from her back to her stomache for a couple of months now, and she was rolling from her stomache to her back when she was 5 weeks old, but stopped. She has figured out now that if she keeps rolling it will get her where she wants to go so now she is log rolling all over the living room!!! Yesterday during therapy is when it seemed to sink in, so right after she rolled right over to see what Hunter was up to. He thought it was great at first and began reading his book to her, but then became annoyed that she kept touching his book so he moved it away : ) It was really cute, and Ella was just so proud of herself!!!

An Angel

The lady in these pictures name is Germaine. Germaine is an angel.

Ella was born on a Wednesday night, on Friday my mom flew in from Alaska. My husband had gone home to spend some time with our son so it was just my mom and I in the hospital room. We were crying. Most of my time in the hospital was spent crying, but this was the first time my mom and I were left alone and we were REALLY crying. In the middle of this in walks Germaine, a CNA at the hospital. Germaine took one look at me and immediately came and sat on my hospital bed. She said "is it your baby?" I said yes. She then hugged me and held me for the longest time. She told me "God knows." and began praying and telling me that things will work out. I can't tell you all that she said, most of my time there is a fog, a bad dream, but I can tell you that she is the first person that gave me any hope. It was kind of strange, some lady I had never met holding me, our cheeks touching each other and her whispering prayers in to my ear, but at the same time it was so comforting. Of course I cried harder hearing her words, and she just kept holding on. When I finally stopped she kissed me on the cheek and said to me "One day you will bring that baby back up here to see me and tell me that everything is good."

Well, that one day was today. I did not remember her name, but I decided that I was going to find her and I did. I knew that if I told her how much her compassion meant to me that I would began to cry, so I wrote all of my feelings in a card. I described Germaine to the nurse working the desk and she went to get her. I was unsure if I would even recognize this lady. She rounded the corner, smiled at me and ran up and gave me a huge hug. I knew it was her, and apparently she had remembered me. She held and loved on Ella. She told me that she knew I would come back. No one at the hospital had showed me any compassion, except for Germaine. She was an angel sent to me. I do not know if at that time she even knew what Ella's diagnoses was, because she did not ask, she simply said that "God knows." To me, looking back, that means that God knew what he was doing when he gave Ella to me. He put her in a family that will love her unconditionally and give her every opportunity possible, and I'm not just talking about me and her father I mean our whole family. God also knew that I really could handle this all, even though when she was born I thought that he had made a huge mistake and that I was not cut out for this. I'm new to the whole religion thing, so I still have a lot of questions about why Ella has Down syndrome, but I do know that she was given to me to change my life. I no longer believe in coincidence and certainly don't trust odds (HA). This is how my life was meant to be. It is no coincidence that Germaine was working that day, I believe she was sent to me and that she is an angel.

While I was up at the hospital I also ran into my OB. Now, I will say that I am not entirely crazy about her. I only saw her twice during my pregnancy, I saw her nurse the rest of the time. The day I went into labor she met me at the hospital and said "I am not doing a C-section on you today, it is too early. No baby today." Well, good I hadn't really planned on having a baby 6 weeks early. She gave her instructions to the nurse and left, about 5 hours later she came back and checked me, she began shaking her head and she said "this is not good. I have to think." and walked out of the room. My husband and I looked at each other, when a doctor says they have to think while shaking her head, it is definitely not good. She came back not even 5 minutes later and said "okay, we are having a baby." Hmmm, didn't she say "no baby!" Well, then began all the paperwork and I was wheeled into the OR about 15 minutes later. Ella was born, no one had any concern in their voice, she was a good size they said and she was crying so everything was good to me. Once I was in recovery the doctor came in and checked on me while my husband was still in the nursery with Ella. She just asked me how I was feeling etc, said the baby was doing good, nothing out of the ordinary to me. A while later, once Chris was in the room with me, the OB had come back in and was checking on me again. While she was in there the pediatrician that attended Ella's birth came in. He told me that he was going to test her for Down's and the OB says, "yeah, I saw it too." Okay, so if she saw it and had already been in to see me why didn't she say anything? Maybe she didn't say anything because I was alone the first time, I don't know. I really didn't know her. So, at that point I didn't really feel one way or the other about her, really I hadn't given her another thought. Then I had my postpartum follow-up. I took Ella in with me. Her comment to me was "well, at least you will always have a baby." Um, not exactly what a mom with a new baby with DS wants to hear. In fact this was one of my initial fears, was that Ella could never be independent and would forever need my constant care. So, needless to say from that point on, I didn't care for my OB. So here I am the hospital today to see my angel, and I run into the OB. She looked at me, and then looked at Ella and seemed quite surprised. I have no doubt that I looked like crap after having the baby and at my postpartum checkup, puffy eyes etc. She asked how old Ella was now, and I told her 8 months, she commented on how big she was and asked if she could hold her. Ella was wonderful, she pulled the OB's hair tried ripping out her earrings, tried putting her hand in the OB's mouth, all the "normal" baby things! The doctor said that she was really strong and looked really good. I was so proud of Ella. As the doctor started to walk away I called to her while Germaine was holding Ella, I told her that I had heard that 92% of parents that found out their baby had DS aborted their baby, she said yes. I told her that I would like her to give out my name and number to parents who find out, so they could call and ask questions. My thoughts on this are maybe if they see that Ella is just a baby, and see her smiling face maybe they will see that they can do it, that Down syndrome is not as hopeless as they fear. Anyhow, she said "okay I'll do that." It didn't dawn on me until I was back in the van that she never asked my name or number, and I highly doubt that she remembers my name. I still don't like her very much.

It was really strange being back up on that floor of the hospital. My memories are not fond, while it should have been a time of joy, my experience was a time of sorrow and hopelessness. But I feel better having gone up there and showing Germaine and the OB that Ella is wonderful.

Piggy Tails

Ella's hair is kind of crazy, well at least it drives me crazy. It all grows towards her forehead so that it hangs in her eyes. Her hair is so fine little clips fall out all the time so I tried the piggytails, her brother thought they were pretty funny!!!

The Shirt Says it ALL!!!

Big Girl

Oh my goodness, she is getting so big. I wish I could just pause her or at least slow her way down, she is growing up way too fast. Here is Ella in her new big girl car seat, that's right she is now too heavy for her infant carrier, didn't expect that from her at 8 months old. Of course I should have learned by now that Ella will always move faster than my expectations, or at least what I thought at first. It's not that I thought she would never grow or be able to do all that she is doing, it's just when doctors tell you that your baby girl will be smaller than "normal" children and will develop at a much slower pace it's kind of hard to in vision the future. I certainly didn't think that at eight months my preemie would weigh 20 and a half lbs. I didn't think she would be smiling, giving kisses, eating baby food, babbling ALL the time, standing in her execersaucer, almost sitting up..... I could go on forever. I certainly didn't think that she would already be so much fun and so interactive, so opinionated and have such personality. At first the future just seemed so bleak and my life was just a fog, but know the future is promising and my life is filled with more delight than I ever dreamed of!!!

Bikini Beauty!

Okay, so it's not a traditional bikini, but it is as close to one that my little fair skinned baby can wear. Poor thing, she has my skin. It's that dreaded time of year again here in Texas, summer. Did I mention that I am from Alaska???? It has been in the 90's for 2 days, so we have busted out Hunter's swimming pool (which the child lives in) and suffering the heat. I don't think Miss Ella is going to do so well in the heat, she is a very hot natured baby and breaks out in heat rashes all over. Thank goodness this is our last summer in Texas : ) Ten and a half months and counting and we are out of this place!!! I don't mean to sound totally over joyed about leaving, while we are not fond of Texas we have met some incredible friends here and will miss them. We are trying to convince everyone we know to move to Spokane. After much consideration we have decided not to move back to Alaska. We think that Fairbanks would be good for Ella as a young child (the town really rallies around people esp children) but it's a small remote town and I fear that there will not be enough opportunity for her as she gets older. Plus being a small town I fear that there will not be children like her that are her age, and I never want her to feel alone. SO, after a lot of research and asking other families we have learned that Washington state has excellent medical care and is really progressive in education programs for people with disabilities. For the rest of us it's seems like our kind of place, lots of outdoorsy things to do, reasonable cost of living and 4 actual seasons. Can you believe it FOUR seasons. I don't know if I have ever actually lived somewhere with 4 seasons. Alaska is cold for 8ish months and then nice for 4, and Texas is HOT for 8ish and then okay for 4. So Spokane sounds like the best spot for us all. Plus my wonderful parents are going to sell their house in Alaska and move there too. My dad is retiring from the Fairbanks Police Department after 29 years and after living there for most of his life, he and my mom are just going to pick up and move, all so that they can be by my kids. Pretty cool parents!!!!

Anyhow, so Ella is a little beauty in her bathing suit, Hunter said that she needs one for when we go to the water park (his favorite place on earth) so here she is her rolls and all, aren't they great!!!

Eating!

Here are some pictures of Ella eating. I started giving her Gerber fruit puffs, (a favorite of Hunter's when he was a baby.) I know that you are supposed to wait until they can pick up objects with there finger and thumb ( the pincher,) but frankly I don't have any idea when that can be and the kid wants to eat. So, with a little help from big brother she is hooked on puffs!!!

I took Ella in yesterday for a weight check, we are monitoring her weight for 3 months, when her thyroid was tested at 7 months it was in the normal range but close to being low so they will retest her in a couple of months, anyhow, she weighed 20lbs 5ozs. Can anyone tell me what happened to my preemie???? Was she eaten by this huge baby???? I have to say except for worrying about her thyroid, I am quite happy that she is a big baby. It is quite normal for children with Down syndrome to be smaller than average, usually due to some difficulties eating, but not Ella, she has been a great eater from day one and obviously has no problem packing on the weight. The down fall to her current weight however is that now we have to change car seats, as she weighs too much for her infant carrier. I don't really know how I am supposed to go grocery shopping or anywhere else I haul the kids. She can't or rather will not sit up yet so I can't stick her in a cart, and there is no way I am going to carry her 20lb self around Walmart. Guess Chris has to go grocery shopping with me, or better yet can stay home with the kids : )

Quick Hunter story. Last week my mom, Chris and I were sitting around the living room while Hunter was playing. Hunter said "Bye mom, I'm going to work." I said " Bye Hunter. Where are do you work? " (this is a game we play a lot, he usually is a cop, fireman, or a garbage truck, not a garbage man a truck.) Expecting the usual Hunter says "I'm going to work with kids with Down syndrome." I said what did you say, surly I didn't hear this right, " I SAID I"M GOING TO WORK WITH KIDS WITH DOWN SYNDROME!!!!" Hunter said clearly annoyed that I didn't hear him the first time. It brought a tear to my eyes. I said "Well, that's a really good job Hunter." He said "Yeah like Deena and Barbara." and then ran off to work.

Deena and Barbara are Ella's ECI (early childhood intervention) therapists. They are so wonderful and are equally as wonderful with Hunter as with Ella. I kept wondering when Down syndrome would come up with Hunter. He is an extremely observant kid so I know he has heard it mentioned a few million times in the past 8 months but he has never said a word about it until now. That same day I received my new calendar from Gigi's Playhouse in the mail, each month has pictures of Downs children dressed up in costumes, policemen, actresses etc. We were looking at the pictures and Hunter said those kids are like Ella. He really is quite a smart kid and I am so thankful that he has Ella in his life, I know that it will make him a more compassionate and patient man. Likewise I am so thankful that Ella has Hunter, he truly is an amazing kid who is going to teach her so much!!!!

Baby Doll

Here are pictures of Ella when she was five days old and yesterday. (8 months old.) My mom and I were sitting on the couch just staring at this new tiny little baby, the smallest one either of us had ever seen. My mom kept saying "she looks like a baby doll." her little features were so small and perfect. I remembered that I had left my favorite baby doll, I got it when I was 3, out in Ella's room. So we laid her by the doll, (which happened to be named DustyDavidBaldyJack, a name my grandad gave it because I changed it so often,) and they were the same size. Pretty amazing. I couldn't help but think of all those years I played with that baby doll and hoped that one day I would have a little baby of my own. I certainly never imagined my life being what it is now. I still have so many questions. It is easy for me to forget that Ella has Down syndrome. Today Ella was doing tummy time on her quilt and getting frustrated because she will not roll off of her stomach and she was getting tired and kept slamming her face down onto the floor. And it struck me, this is something that Hunter did at about 4 months old, and Ella is twice that age. Does it matter? NO. But it just strikes at my heart. Why does Ella have to work so much harder at everything she does than Hunter did? Why does she have to tire out easily? Why does she make so much noise when she breathes? Why does she have so many doctors appts? Why does she have weekly therapy? Why do people stare at her just that extra second trying to figure out what is different about her? The answer to all those questions is DOWN SYNDROME.

What really drives me crazy is that I know it doesn't matter, really I do. But I still have days/weeks where I wonder WHY??? Will this ever go away? I hope so. I never want Ella to think that she has caused me pain or heartache, but she has....well the Down syndrome has. I only want her to know that I know she can do anything she wants, and I want nothing more than for her to be happy and know she is loved.

Anyhow....... back to the pictures. My mom and I were standing over the crib staring at Ella and it just dawned on me how huge she is getting!!! She was 5lbs 10ozs when she was born and now weighs over 19lbs. All the books I've read lead me to believe that because she has DS that she would be tiny, HA HA HA!!!! In fact at her 6 month check up when her height/weight/head circumference were plotted on the Down syndrome growth chart her height was in the 75th percentile, (which Chris, Hunter and I are not tall people at all so we figured she was doomed), her head circumference was in the 95th percentile (gotta love my big headed babies!!!) and her weight was completely off the chart, not 99th percentile OFF the chart!!! Wow, if only being chubby stayed cute through adulthood : ) So staring at this huge baby in her crib I remembered DustyDavidBaldyJack and figured I would get a comparison pic and there they are. What a difference!!!

Blue Bells

Here are some pics of my lovely Ella in the Blue Bells, the wild flower here in Texas. I figured since she was born here and we are definitely not staying here that I had better go ahead and take them. She was really funny, it's amazing I actually got any pictures. Ella was obsessed with putting the flowers in her mouth, I can't count how many times I fished petals out of there. It was so cute though!!!

It's been a tough week and a half for me, I had a tummy tuck (thanks to the Air Force!!!) last Tuesday so have been layed up! The pain wasn't too unbearable, the hardest part has been not being able to pick up my baby. My mom came down from Alaska to help, thank God, so Ella is nice and spoiled now : ) It has been nine days since my surgery so I have been holding Ella but still not lifting her. Holding Ella is not a very easy thing to do. The child likes to move, A LOT!!! Which, is a good thing don't get me wrong but when you are in pain not so much fun.

Ella's therapists through ECI (Early Childhood Intervention) have been working with Ella to sit up on her own. Not happening. She has decided that she does not like to sit, at all. She only wants to stand. She will not sit in her Bumboo chair anymore, she just lifts her hips in the air and tries to stand up. We have tried everything to distract her, the only thing that works is her brother. Of course trying to get Hunter to cooperate and sit still in front of her when we want him to is equally as hard. So who knows when she will sit on her own???

I can't believe that Ella is eight months old now, wow how our lives have changed. She is just so wonderful. Anyhow, back to resting. (mom leaves in 4 days so have to rest while I can!!!)