31 for 21 Milestone Monday: CUPS

Transitioning Gwyneth away from a bottle was a very long process for us.  We moved her to a sippy cup that was similar to a bottle with a soft spout.  Then we moved her to hard spout sippy cups.  She also learned to drink from straws.

At school for the last two and a half months she has been using a cup with a lid that has a small spout but no valve to prevent spilling.  So if it is turned upside down the liquid will pour out.  At her IEP meeting last week, I asked that one of her goals involving cup drinking could be made more specific by saying she will be able to drink from an "open" cup.  I am now sending in a cup that has a recessed lid with holes in it as her next step to drinking from a completely open cup.  She has been doing well with this cup which I bought from Talk Tools several years ago.  We also purchased the cut-out cups so we will try those soon too.  I am really pleased that Gwyn is willing to try new cups now and doesn't refuse to use anything that looks different from what she's used to.  These new cups will teach her how to close her lips on the edge of a cup instead of using a spout.

Talk Tools has many great feeding and speech supplies: http://www.talktools.com/  The honey bear cup was a huge help in teaching Gwyneth how to drink from a straw.  I really recommend their feeding utensils and cups.

31 for 21 Sibling Sunday: S is for SHARING

S is for Sharing

31 for 21 Speech Saturday: TRAINING

Reid took Gwyn to her Speech Therapy appointment Saturday morning and I went into Atlanta for a Parent Liaison training from the Down Syndrome Association of Atlanta.  It was held at the new Down syndrome awareness center Gigi's Playhouse.  There was so much great information: things I can use in my new volunteer role of being a parent contact for hospitals and new families; and info I can use for Gwyn's health and development.  It was a very motivational day for me and I came away with printed materials that I can start to distribute to local doctor's offices.

Separate from our official training session, we got to hear from the director of Gigi's Atlanta location.  She described a list of items called "Formula 21" that affect kids with Down syndrome and should be addressed in their Early Intervention program: http://theskatefoundation.com/Formula21.html  Most of these issues I have not thought very much about and I feel like I need to do some catch up with Gwyneth now.  She is way overdue to have her first sleep study for sleep apnea and I feel guilty about that.  I did a small amount of oral motor exercises when she was younger and I think that has improved her speech.  And we do have a fairly healthy diet, but I'm interested in learning what more we could do nutritionally to give her the healthiest outcomes in her life.

Here are links to information on sleep apnea and healthcare guidelines for young kids with Down syndrome:
http://downsyndrome.nacd.org/sleep_apnea.php
http://www.ndss.org/Resources/Health-Care/Health-Care-Guidelines/Ages-1-5/

31 for 21 FAQ Friday: MEDICAL ISSUES?

A common question about my daughter who has Down syndrome: What medical issues has she experienced?

Answer: A heart defect that required surgery, but other than that her health has been that of a "normal" little girl.

She was getting sick a lot after starting preschool, and after her eighth time having strep, we had her tonsils taken out last May.

Here is my detailed description of the heart surgery experience:

Gwyneth was born with a hole in her heart called a VSD (Ventricular Septal Defect). This drawing of a heart was given to us by her cardiologist to show where the VSD was. The arrow in the picture shows where the blood was flowing through the hole from her left ventricle to the right.

The heart defect was discovered on an Echocardiogram performed soon after Gwyneth's birth in March 2008.  She needed to be on a small amount of oxygen and when we brought her home at 6 days old, we had portable oxygen tanks and a pulse-ox monitor.  She remained on the oxygen until just before her surgery at 4 and a half months old in July 2008.  Here's my non-scientific explanation of what the medical team at Children's Hospital (in Aurora, CO) had to do to repair it:

We went to the hospital 24 hours before Gwyneth's surgery to do some prep work. She had blood drawn, which she made her cry, but not too much. She had an EKG (Electrocardiogram) where the electrical activity of her heart was recorded by placing nodes on her skin. They are just stickers so she didn't mind at all. She had a chest x-ray which was her least favorite part of the day. In the radiology department, we were allowed in with her and were given lead smocks to wear. They have a very large machine that looms over a low table. They asked us to place Gwyneth on the table and hold her arms up next to her head and hold her hips and legs down. Being held down is what made her scream and cry. It was hard for us to see her so scared, but the x-rays were quick. They took x-rays while she was lying on her back and her side, each time with us restraining her while she was crying. Poor girl!  But we were comforted by the fact that we made many trips back to the radiology department for x-rays after her surgery and she was completely used to it after a few times and let us hold her down without any complaints!

She next had to be sedated with a drug called Chloral Hydrate so that an Echocardiogram (an ultrasound of the heart) could be performed. She had had many ECHOs in the past while being awake, but for the surgery they needed a very clear picture of heart so she had to be completely still. She was still "asleep" from the ECHO while we pulled her around in our Children's Hospital red wagon and had a tour of the CICU (Cardiac Intensive Care Unit) where she would go after the surgery was complete. We also met with the anesthesiologist and the surgeon to discuss the surgery and talk about the risks and recovery.  That night we stayed in a hotel near the hospital because our home was an hour drive away and the surgery was scheduled for early the next morning.

On the morning of the surgery we washed Gwyneth's chest with an antiseptic skin cleanser, then left our hotel to check in at 6 A.M. at the hospital. When Gwyneth was taken away for surgery we waited outside the cardiac unit for 4-5 hours. While the surgery was happening, we were given periodic updates by a nurse. The surgery was "open-heart" which means they had to open her chest and cut through her breastbone to expose her heart. They stopped her heart for around an hour while a heart-lung machine pumped for her. To repair the VSD, the surgeon stitched a small synthetic patch over the hole. (For an excellent behind-the-scenes description of a surgery very similar to Gwyneth's, check out the book "Choosing Naia" by Mitchell Zuckoff. Naia's surgery is described in Chapter 17 and I felt chills while reading it.)

We sat and waited for news during the surgery with our red wagon of essential items: pillows, suitcase of clothes, breastpump.... I tried to keep busy making a blanket, and Reid did his best to distract me by making fun of my knitting skills. I knit an entire row in Gwyneth's blanket before I realized it was the wrong stitch, and I spent the rest of the time undoing all the stitches....

After the surgery, we were taken to the CICU where Gwyneth was being monitored very closely.  I have a close-up picture of her with all of her wires and tubes, but it's a bit graphic. It was shocking to see her that way and I almost fainted the first time the nurses let me try to change her diaper.

It took her several days to start to seem like herself again. Needless to say, she was in a lot of pain and there were ups and downs with her recovery. When she was ready, Gwyn was moved out of the CICU and into the step-down unit. One of her favorite things was a visit from the Respiratory Therapist who would pat Gwyneth's back very firmly with something like a small rubber mallet.

I stayed and slept in Gwyn's room during her week-long recovery, pumping breast milk and learning from the nurses how to give her the medications and wash her incision.  Reid was able to stay in a family friend's condo in Denver so he could come to hospital every day.  We had so much support from family, friends, and co-workers during this time. We appreciated everything that everyone did for us and Gwyneth!

Gwyneth's surgery was considered very successful by the medical professionals. The VSD was closed completely with no residual leakage, which means not only will she not need any further surgeries, her heart is 100% healed! She came home on some medications and a small amount of oxygen, but we were able to wean her off of everything before too long. Her post-operative care included cleaning her incision every night and no tummy time for a while. She couldn't be submerged in water and I used double or triple bibs to keep her chest dry! We couldn't pick her up under her arms for the 6-8 weeks of the post-op period.

Her latest cardiology check-up was last January and they thought she looked and sounded so good (no heart murmur at all) that her next check-up won't need to be until January 2015!

31 for 21 This Moment Thursday: HER OTHER LIFE

Gwyneth is only 4 and a half years old, but I realized today that she already has a whole other life outside of our family.  I had a meeting at her school to extend some of her IEP goals (now that she has started walking) and it ended up covering the general parent-teacher conference as well.  I was shocked to see how different Gwyn's school persona is from her personality at home.

During the meeting, Gwyn was crawling around and interacting with areas all over the classroom.  She was very busy and active and engaged all on her own.  At home, she is not very active and I have a very hard time motivating her to play independently, let alone "teach" her anything.  She seems to sense when I get into "therapy mode" and she stubbornly resists those activities.

So I was surprised to see her pull up at a table to drink from her juice box, move around magnetic words on a board, point to words on a poster and "read" them, pull up at a chalkboard easel and draw with chalk and then use the eraser......  She went close to an area that was off limits (some electronics I think) and just before she touched it she looked at her teacher.  The teacher gave her a stern look and Gwyn smiled mischievously and pulled her hand away.  The teacher also showed me their sensory playroom in another part of the school and I saw Gwyn climbing all over bumpy foam mats and trying to jump on a mini trampoline with the teacher's help.  It was a very eye-opening visit for me.

I didn't think it could start so early that Gwyn would have created another life for herself, but it has.  Part of me is sad to see that there is so much that she experiences during her weekdays that I have no idea about.  I feel especially in the dark because she cannot tell me any details of her day when she gets home.  But mostly, I am proud that she is establishing an independent life outside of our family unit.  I want her to learn to be her own person.  I want her to learn how to get along without being completely dependent on us.  I want her to build relationships with the people in her world.  And today I saw the beginning of Gwyn's Other Life.