For those who may be walking the road of medical care for a cl/cp child, I will tell you some of the things I do that have really seemed to help us.
- Sam and I run through the whole day and plan out stops.
- We stop at the same rest area/potty each time.
- Everything is packed the night before (I don't let the girls see me pack) and loaded into the car the day of. Dollies, etc. are also loaded the day of. : )
- I pack toys and snacks that we don't normally use/have in addition to what we normally have. Stickers, books, crayons/coloring books, lacing cards, special blankets for toys, Goldfish, Cheerios, gerber puffs, applesauce cups, fruit squeezy pouches, bananas, clemetines, etc. Sometimes, we will have juice if we eat out. We have dental issues, so I try to avoid acidic things. I don't pack sugary foods because spikes and dips in blood sugar are not fun and don't help our moods.
- If it goes in the car, it has to be easy clean up. Spills cause stress and we don't need any more stress. Water only in the car, and dry snacks (apple slices would be an exception). I choose snacks that make them happy. : )
- I pack plenty of food for Sam and myself. If our blood sugar gets too low, then we can't be the patient parents that we need to be. : )
- I do my best not to pack too much. Everything needs to fit in the diaper bag and one other reasonably sized bag.
- Be well rested, committed to the day and whatever changes will come up, have a good attitude and try and make this a positive experience. When I go to these appoitments, I try and stay away from my phone. I use it as time for holding my girls and building attachment. We talk about everything, I try to engage them and we sing A LOT of songs in the car. : ) This time is 100% about them, their feeling and needs.
- Eat often. : )
- I do my best to use the same parenting methods in the home and outside the home. That being said, I try and set my children up for success.
- We don't talk about the actual doctor visit until the morning of. I try and give them an explanation of what docotor we will see and what they will do. For example, today I told them we would see Flora Lin's doctor who would help her with her cleft (we've talked about her cleft many, many times before this). He would look at her ears and her cleft. We are all done with Charlotte's docotr. This is Flora Lin's doctor. I briefly showed them what the docotor would do (I looked in and touched her ears, looked in her mouth and touched her lips). As I talk to them I use signs that they know well.
- As each doctor comes in, I tell the child simply what they will be doing. Sometimes, I let the doctor check my ears, etc. first if I think the child is about to loose it. At our first appointments, the girls were afraid, didn't trust us and communication was mroe of an issue. As i've done the things mentioned each time, they are now more relaxed at appointments and the drive.
- Eat often. : )
- Hug, kiss and smile more than usual.
- Dress them in something comfortable, but that they like and is a little special. Our girls love their cowgirl boots. Right now, they are also into stockings, overalls, and things with pockets, buttons, zippers and bows.
- Find the fun. We spent some time taking little walks and following a blue pattern in the floor. We tried walking in different ways on the blue part. We talk about the things in the waiting room, espeically the other children. Babies, drinking bottles, little girls that also have special boots, men with hats on, etc.
- Rotate what you are doing often. We quickly go through stickers, books, looking at pictures, eating and drinking. Right now, going potty is also a big activity for us! ; )
- Bring sanitizing wipes, spray. This gave me more peace of mind with chairs, tables, toilets, etc. I wasable to say "no" less and worry less. : )
- Eat often. : )
- Even the best laid plans are upset. Be as prepared as possible and leave as much margin as possible in your day. We had an appointment at 11. We saw the doctor at 3. We stayed positive and upbeat for our girls and had enough to entertain and feed them to carry us through that time.
- Choose kindness towards your children and in front of your children. You can't go wrong with kindness. : )
A long wait for all of us!
Sometimes I get in the picture!
FL saw the audiologist again, but her ear was still too clogged for them to determine how much she can hear out of it. We also saw the ENT. Tubes will be placed during surgery and her ears will get a good cleaning.
I had a good talk with the speech therapist, and since she is doing so well cognitively with her communication I can relax and just be her mom instead of mom and therapist until we've been home about six months. : ). After that, I will really start to pursue therapy for her. We'll do little things here and there, but nothing big for now.
We met with the surgeon again and he assured us that her cleft was very "straightforward" and he didn't expect any complications. It was a good meeting.
After that we closed down the anesthesia unit as their last patients. We went through a Question answer session and recieved our instructions. It still seems a little surreal at this point.
And that was our day at the hospital clinic! On to more pictures!
She knows she's funny! Look at her eyes!
Oh, silly Flora Lin! Can you tell they don't get juice often?!
So so good!
And you know we had a dancing session in the exam room! Here, Charlotte is reenacting scenes from Saturday Night Fever. Flora Lin is doing the Funky Chicken. : )
It was a long day, but we made it!
Great picture of you with the girls
ReplyDeleteWow - great mom and dad, so prepared :)
ReplyDeleteSilly girls. Pictures are worth 1000 words. It may be my imagination, but I feel like I see progress, happiness, respect and love in the pictures of the girls - as opposed to fear and uncertainty. So much growth in so little time.