Prevacid here we come

Well, the doc was in ahuge hurry but he said both Kara and Meghan have GERD and is testing their blood for Celiac. I know that if they get a positive blood test it must be confirmed with a biopsy as well, so I am kind of hoping they do not show any markers for it. Anesthesia is scary with children with Ds, though Meghan does OK with dental exams, she has a hard time coming out of the drugged sleep.

Meghan weighed 40 pounds, she has lost weight this summer, typical for her, she has a hard time with heat and does nto like to eat.

Meghan and the U of A study

Learning and Memory Across the Lifespan
The DSRG has recently initiated a study of learning in DS (ages 8-late adulthood). This study is examining individual's use of differing strategies to solve problems, their memory skills, and their skills in motor learning. The goal is to pinpoint areas of strengths and weakness and to use this information to understand why some individuals with Down syndrome may excel in their learning when others may have more cognitive difficulties.

If you know me well, you know I often have trouble getting anywhere on time. No, I do not think my time is worth more than another persons is, there is no meanness involved, just a forgetful person who has to keep running into the house to get things I need for the appointment, trip, etc. Add to that a daughter who hates to be told what to do, perhaps as a way to gain some independence?
You can almost feel her thinking; “I will go when I want to go”

Add to that scenario my oldest son dropping by after a job interview and may I say he looked very handsome in her shirt and tie. (Some prayers he gets that job would be greatly appreciated) No way would I leave then, I had to hear how the interview went.

Therefore, we finally get on the road and are already running late when I automatically drive to UMC instead of where I was supposed to go U of A. I just did not read the map clearly enough, we had problems parking at UMC and had to walk into the hospital from a ways away, Meghan was red-faced from the 95 degree F heat and Moms rash was turning a rosy pink, made it stand out nicely, I am so weary of this rash, wish it would leave forever.

We rode the elevator to the seventh floor, nearly 30 minutes late, and no one knew what I was referring to. Why? Because the appointment was at the University, not the hospital, by the time we walked back and made our way to the University we were almost one hour late. It was mortifying, but both Jamie and Jenne were very kind about it. Thank goodness.

Meghan’s testing began with a flip chart containing numerous images, all they asked was for her to point to them, she would not do this for them (it always embarrasses me when she does this). After many failed attempts they moved on to a card sorting task, she did well on the first arm, but the second required more abstract thinking, and she got maybe 4 correct, and two may have been accidents.

They had stickers as rewards for her, but Meghan never has been motivated by them, so they did not help. The only thing that really works consistently with her is using humor to motivate her, and I shared this with them. It did help, but she is not very patient with new people, especially with therapy type activities, so she was using her avoidance tactics.

Before the computer segment of the evaluation, they allowed Meghan to choose a toy from a bin, she ultimately chose a Tonka truck, and I picked her up and sat her in front of the computer.

The first activity required her to touch the screen to indicate what square was below the cat, she caught on to this, but when they asked her to point to the opposite side with the frog, she did not comprehend what they were asking of her.

The last part of the series was a cause and effect, she was to touch the same image repeatedly to produce a green screen, she did this 4-5 times (with a lot of prompting) and then touched the wrong shape. After 3 times I noticed a gleam in her eye when she did this, she knew it was wrong, but wanted to end the “game”. After that we were done.

I was sad to hear that we would not come back for another year; I was hoping it would be a weekly or monthly session and perhaps help her in this area. That is not the purpose of this specific study, but I can see where she needs help and can reproduce the tasks at home. Obviously abstract thought is not her forte; I am cure it is not for most kids with trisomy.

We were so happy to receive two $20 Target gift cards at the end of the session; Meghan can pick out something special. Sadly we will need to use the other for diapers as it is a rough time financially for us, school starts for Tom soon, praise God, it has been a rough summer.

Candles Candles Candles

I have 4 boxes full of candles for sale, my sister Ellen helped me with candles for a fundraiser for Kara's adoption, but we traveled before I could sell them.


Gold Canyon Candles, I have all but one of the Baking Series, and an awful lot of Holiday candles, including Thanksgiving and Christmas. I would love to sell them, so if you are interested, let me know by leaving a comment.

Picture

Getting used to two little sisters

She tries so hard to love on Amanda, but Amanda is not comfortable with her new sisters yet, I know that will take time. I caught Amanda smiling as Kara and Meghan laughed and played with each other. So maybe soon...

Can you see how mad my dear little Meghan was at Kara. Kara was assaulting Amanda, and Meghan who is always a peacekeeper, was intervening. Kara was smacking her hands away.

Days get long here sometimes, Meghan seems to adjust fine to her sisters, but Kara, well, she is not, and is giving Meghan a hard time. Meghan thinks she is Kara's Mom though, very bossy. It is nice to see her mature as a result of our adoptions.

I still call her baby sometimes, she looks indignant. She no longer will sleep with me, she is a little mad that I leave and bring home other daughters I am sure. I miss her sweet head resting on my shoulder as I sleep. Maybe she is growing up?

Yesterday while her sisters were napping we watched Ice Princess, she was so happy that she kept running over and saying "hug, hug" and holding me tight, her soft cheek pressing next to mine. So I can see she misses our special times together too.

I think I can say with some authority though that just because a child has Down syndrome, does not mean you can pigeonhole their character traits, none of these three is like the other, just like all children, they are individuals.

The girls today

Meghan was trying her best to corral the little girls for a picture in their Garden Party, but it was just impossible for both of us. Here is the best picture of 30. LOL

Meghan's birth story

When Meghan was born December 11, 2000, we saw immediately that she had Down syndrome; we had such a mixture of emotions. While we lie on the bed holding our new daughter, we could see the midwives who were in attendance of her water birth with their heads together whispering to one another.

Waiting and watching them, my thoughts and overwhelming sorrow were that perhaps Meghan would never learn to read well enough to read the baby book I brought with me to write in, something I did following the birth of all of our children. I thought of nothing else, perhaps from the shock, but being an avid reader, that was devastating to me.

30 minutes after her birth they approached us and apprehensively told us that they saw signs she had Down syndrome. I said "we know" and their jaws dropped. They then said that the reasons they thought this were a single Palmer crease on one hand, hypotonia (floppy), almond shaped eyes, flat facial profile, and other things I cannot remember. Tom began to sob, it was not the same as me saying it, and hearing from them broke his heart. I held him while I held our daughter and felt the floor drop out from beneath me, I was counting on him to support me through this, but I could see that it may be the other way around.

The midwives were so sad for us; we were a little scared because the midwife thought she heard a murmur when she listened to Meghan's heart in the middle of the night. She checked her heart every 30 minutes after that, turned on the lights to check Meghan's color, no one slept except our new daughter.

After that very long sleepless night, we got up and I got dressed. We quickly got ready to leave, as we were to go immediately to the doctors office to have Meghan examined more thoroughly. Our family doctor was called we were shocked when he refused to see her, he had never indicated that he would not care for her while I was pregnant, but he said he no longer took infants as patients. Thus began a stressful 3-hour wait while the midwives frantically called every pediatrician in town trying to find one who would see our daughter.
Finally, one agreed and we were told to report at 1:00, so we drove home to see our waiting children and let them see Meghan. Halfway down the road, I began to cry; something I had not done so far, Tom pulled over and we held one another once more. We stayed there a long time on Wyatt Drive, just crying, afraid of the future, afraid to move forward at that point.

After arriving home I walked immediately into our bedroom and sat in the glider rocker with Meghan, I turned on the lullaby music that I played while pregnant and rocked her. Our children knew something was wrong with their new sister, but they did not know about Down syndrome, their dad did not tell them over the phone. I sat with our oldest Fred and told him his sister had Down syndrome. He talked about a boy at his school with Down syndrome who was the butt of every ones jokes and my son was very sad picturing his sister’s future. He said no one was very kind to people with Down syndrome in HS.

Each one of the children came into the room while I explained her diagnosis, what I knew at that time at any rate. They held Meghan and they all looked as scared as I felt, we were all worried about her heart.

We left soon after and went to University Medical Center. After we found a place to park, we trudged up three flights of stairs to the entrance. I was beyond exhausted and this was the first time I did not have abounding energy after the birth of one of my children. Each stair seemed so high, each one such an incredible effort. (Even today walking up those stairs stirs up the memory of that day) I had given birth less than 24 hours before, I could not believe I was walking up those stairs with a daughter who had a birth defect; Down syndrome and a heart issue, my mind was racing, as was my heart.

Once inside we made our way to the third floor riding the elevator with a few other people. I remember not wanting to let them see Meghan, afraid I would get looks of pity or shock. We checked in and we waited for a while before we were called back to the room. Two doctors entered an older and a very young one. They examined our daughter rather indelicately and then gave her to me and I began to nurse her.

The older doctor told us he was sorry and immediately told us Meghan would never read or write, she could be severely mentally retarded, most likely would never leave home, and since we were older parents, after our deaths we would burden our older children with her for the rest of their lives. He recommended we give her up for adoption and forget we ever had her. He said we could just leave her there and a social worker would come and get her.

Being the type of mom that falls in love with her babies while pregnant, that had never even crossed my mind, I looked at Tom, and he looked shocked too. I remember telling the doctor very firmly that she was our daughter, we loved her, and she was staying with us, I can’t remember if Tom said anything, I am sure he did, but my focus was on the doctor and his shocking words. The old doctor left, I was so upset with him I could no longer look at him, the young one stayed and he began to go over everything we needed to do.

Seeing a cardiologist was one of them, so minutes later we went to another office and met the cardiologist who then performed an echocardiogram on our daughter and drew a diagram of her heart issues, she had a PDA, a possible coarctation of her aorta, a VSD and an ASD. He warned us of the signs of heart failure and sent us home. When Meghan was 5 days old she exhibited all of the signs of cardiac failure, she had just finished nursing and her breathing became labored, her face pale, her nail beds bluish. We got in the car a rushed to the emergency room. When we got back to triage, I had to tell the nurse that our daughter had Down syndrome, it was the first time I had said it to a stranger, I began to cry, and I thought Meghan was dying. We sat there in the waiting room while she struggled to breathe, her breath very audible, a condition called stridor. We were very upset that they were making us wait for so long. We sat there for over and hour and very slowly Meghan's breathing returned to normal.

We were finally called back, much to our immense relief, and we placed her on that cold examination table. The nurse placed a pulse OX on her big toe, and it read 86%, they repositioned the probe and it was 90%, and 5 minutes later, it was 97% so they assumed it was a bad connection and they said everything was fine and sent us home. We left with an uneasy flutter in our hearts, they did not tell us why she had the episode, and they had admonished me for over-reacting as well. We were confused and we were angry, but more than that, we were scared.

It was not until we saw her new cardiologist at 10 days old that he saw what I had been seeing after she nursed, her ribcage retracting, her color was ashen, he asked how long that had been happening, I said "Since birth" but I could get no one would listen to me about it. He quickly left the room and brought in a pulmonologist who watched her breath and said we needed a broncoscopy to make sure she did not have any atresias. The doctors talked about readmitting Meghan into the hospital for observation, but they felt she was better off at home and away from germs in the hospital, warning us that everything and everyone had to stay very clean around her because of her heart condition.

We left from there and into the hospital where she was admitted for the test. We called our children and told them we would be back later that evening, our sons were older, 23, 21, and 18 and were watching their brother Brian 14, sister Julia 8. Something they had done a lot as we saw a doctor nearly every day since their new sisters birth.

After sedation, we handed her over to the doctors while my eyes filled with tears; it is scary handing my tiny baby over for the test. 30 minutes later, they came out and told us Meghan has Tracheomalacia, or a floppy airway, and her windpipe was collapsing after she nursed, dropping her oxygen saturation below 90%. It was not a condition they could help with medication, she would need to grow and get stronger cartilage in order for the condition to resolve, they said it would take years and rarely a tracheostomy may be indicated. They also said she had reflux and prescribed two medicines to control it. The reflux was actually causing the stridor as the digestive enzymes were irritating her trachea. The stridor continued until she was over 2 years of age.

After the procedure she got very ill, the probe, which was a flexible fiber optic smaller than a spaghetti noodle fed through her nose and into her trachea and esophagus, had inflamed her trachea. The swelling dropped her oxygen saturation to 65%, she was put on oxygen and the 30-minute test became a 3-day hospital stay. As the swelling went down, she was weaned off the oxygen until she was on room air and no longer needed anything. They were going to send us home with a pulse oximeter and oxygen, but they were happy to see her breathing well on her own.

An occupational therapist specializing in breastfeeding met with me before we left to watch Meghan breastfeed. She determined that Meghan had an immature suck-swallow-breath pattern and asked how I managed to get her to nurse. I explained to her that I noticed she had no rhythm while nursing, so I would play her lullabies and pat her bottom while we rocked; she would suck to that rhythm and would feed well. It would take 5-6 weeks before she learned to do this on her own, but she loved her rocking chair. She was weighed twice a week to be certain she was not failure to thrive, but gladly she gained weight steadily and did not need supplemental formula.

We went home on Christmas Eve, and frantically finished shopping for our other children that afternoon, so much had happened and the holidays snuck up on us, thankfully the boys set up the tree days before. That Christmas was bittersweet for all of us.

We visited with the midwives for my post delivery check up in January and the midwife asked if we were keeping Meghan, she said they were afraid we would give her up. When we said of course, she was staying with us, she was our daughter, and she was visibly relieved. She looked Meghan over, asked about her heart, but that same sense of sadness, of pity, was still present, and also something that felt like guilt.

I had no prenatal screening for Down syndrome you see, they had encouraged me, sometimes harangued me to get the tests done. As a mother of "advanced maternal age”, it was standard to get amniocentesis, but I refused. I was afraid the amniocentesis would hurt my baby, as indeed I had a 1 in 100 chance of losing her to miscarriage if I had the test. I could not take that risk. We did get periodic blood tests and ultrasounds, which would not harm Meghan. Still I had an uneasy feeling during my pregnancy; I kept telling Tom that something was wrong with her and I felt this she was going to change our lives. Five Ultrasounds showed nothing more than a little shorter than average humerus and femur length, which were still within normal ranges, nothing caused anyone concern, we were told she was fine, but that ultrasonography was not an exact diagnostic tool.

Meghan's medical issues were minor compared to friends whose children had many chronic and life threatening defects and conditions. Still we had always had healthy children and everything we went through with Meghan was new to us.

As she received early intervention therapies and grew and changed we also grew, we were calmer, more confident at parenting her, and very much in awe of her strength and her sweet spirit. We adored our sweet angel and we believed that she brought out the best in all of us. We were determined she would have the best life we could give her. Now 6 1/2, her heart spontaneously healed, her trachealmalacia resolved, and she was very healthy.

Meghan is an amazing child. A great mimic, talking better daily, very funny, extremely stubborn, and still with that sweet spirit that brings out the best in all of us. It was because of our love for Meghan that we wanted to adopt two more children with Down syndrome.

Getting two new sisters, and adjusting

Meghan had a grand adventure travelling to Ukraine in November last year and meeting Kara. It was not all sunshine and lollipops for her though, as we had to sit in cars for hours and her not being potty trained 100%, it made for messes that were hard to clean, and disgruntled facilitators who were unhappy with a 6 year old having BM's in their cars.

Still she got to experience snow and she was delighted with it, throwing snowballs at us, slipping on ice, and loving the cold air on her face. She barely tolerates heat, cold is another story, she thrives in it.

She did not really like Kara sitting with me and did her best to place herself between us , her behavior spiralled out of control a few times and we had to get stern with her, and she really disliked the food in the dining hall, and refused to eat most of it.

Did she like the trip? Does she remember anything about it? I wish she had the words to tell us, but she does not.

She lovingly calls Kara Anna, still believing she is Oksana, the sister she never met. It's OK if she want to believe this, why complicate her life with our sorrow over losing a precious daughter?

Now she has a new sister, Amanda, here from Estonia, for not even a week yet. Amanda is more frail than Kara and very sweet, and Meghan is doting on her. I think the most amazing thing is how it has brought out a new maturity in her, a mothering instinct I had not seen before.

We always believed Meghan was amazing and kind, so sweet (and stubborn) It is so comforting to see her adjust to being a big sister with such ease. I am so proud of her, but then, I always have been.

Trying out a new template

Hmmm, I find this confusing, I wanted to try a template not found on Blogger, as they are too generic for me, but this one does not have the blogger navigation unless I enter it through dashboard, any ideas?

For Meghan with Love

So after months of writing about Meghan's two new sisters, I decided she deserved a blog of her own. She has been featured in her sisters blogs, but golly gee, she needs to be featured in her own. So here we are, all ready to begin a blog for my Meghan, born with Down syndrome in 2000. She is the light of our lives and the reason we now are a family of 10. Because of our love for her we could not bear for her sister to grow up without a family.

We are so happy to have completed our family and Meghan has stepped up to be an awesome big sister. She has really grown up since Kara came home.