My sweet little Caden is growing up so fast! Although he’s still the baby of the family he has become quite the little man recently. Medically 2016 has been a bit rough for him but he is quite the character and is hitting many other important milestones despite the set-backs. Caden is a super sweet boy and he has really began to get a little personality which was been so much fun to watch develop. He knows what he wants and lets us know loud and clear! Here’s a little snapshot of all his favorites at 19 months.
- Song: Twinkle, Twinkle Little Star. As soon as the song starts playing he doing the motions to the song
- Toy: The Fishing puzzle. We have a magnetic fishing puzzle that Caden loves to play with! He will “catch” the fish, take it off, and then fling it across the room
- Book: Goodnight Moon. Caden loves to touch the pages of the book and “read” along
- Food: Ice Cream! Caden has a major sweet tooth
- New Trick: Giving kisses. He loves to give people kisses and then ham it up and make sure everyone saw that he gave a kiss. He’s also taken to kissing my hand or arm when I’m holding him but not paying attention in an attempt to make me pay attention to him
- Word: Amma or Mama or Mommy shouted loudly over and over again to get me or Ramana’s (his caregiver) attention
- Part of the Day: Preschool! He loves singing songs, playing with toys, and reading books.
Caden is also so close to crawling. He’s so stubborn because he’s been right on the edge of going into 4 point for almost a month now. He will scoot himself around in a circle using his hands and try to reach as far as possible without shifting his weight forward to get a toy but he will not crawl. In fact if I put him into the crawling position he cries so much it would seem that he was in major pain. But when I put him back on his stomach he stops crying immediately. Such a little prince. So for now we will continue to put toys outside his reach and he will crawl when he wants to!
Caden has become quite the little ham! He loves to flutter his eyelashes and make faces to get what he wants. I was taking photos of him for Valentine’s Day and he refused to smile for me! He would only tilt his head down and give me smoldering looks or look into the distance. He looked so much like a little model that I got laughing and only then did he crack me a smile! Caden is a hard to win over child too. When my sister was visiting I thought that he would go to her with no problems because we look so much a like. But it took almost the entire time she was visiting before he would willing go to her. Whenever we take him out places people are always trying to win him over or make him smile and he just looks at them like they’re crazy.
Caden is happiest when he is being held by me or his caregiver. He is my baby and might be a little too attached. Or spoiled. It all depends on how you look at it. I’ve been spending more time than usual with him having so many medical issues recently and as a result he expects to be picked up every time I walk into the room he’s in. If I don’t stop and pay attention to him some major waterworks happen. Sometimes I have to stop and remind myself that it is developmentally appropriate and also a good sign of a secure attachment which is important for a child growing up in these settings. Plus have you ever meet a cuter baby? It’s impossible not to be completely in love with him!
Medically 2016 has been a rough year for Caden. In January several of his wounds got infected with strep and they were constantly oozing puss. We got that cleared up and then he started spiking super high fevers, had a elevated heart rate, and was just generally sick. He got admitted to the hospital and diagnosed with a bad UTI. He’s also been having issues with his throat- probably strictures. He gags almost every time he eats and is breathing has been more labored. After several doctor visits I was finally able to find a doctor who would listen to me and ordered a swallow study. The swallow study was incorrectly done using outdated technology so were basically still at square one with doctors no where as concerned as I am about the complications of not addressing the strictures. He’s also been running daily fevers for over 2 weeks now and we can’t figure out the cause. In addition to everything going on he has lost weight and is just generally less active. Caden has been relatively healthy up until this point so I’m not sure why all of a sudden he has so many issues going on. I’ve been trying to address them but the Indian medical system is frustrating and because his disease is so rare hardly anyone knows about it. At one point it was looking like there would be an opportunity in March to take Caden to a doctor in Bangalore who is a specialist in EB. Originally he told us there would be a clinic in March that we could attend to get a multi-disciplinary team to look at Caden. Unfortunately he won’t be able to hold a clinic until July. I’m hoping we can address the major issues he is having in the mean time and then get a better handle on some of the long term issues in July.
In between finding out about the clinic, having bad experiences at doctors this week, and having more questions then answers I have been feeling pretty down this week. I was talking about it to a friend and she identified exactly what was going on- I had no hope for Caden. His condition is hard to manage in the best of conditions but in India where there is limited knowledge of EB and limited resources it’s proving especially difficult. The other day the doctor asked me what I wanted him to do. In the past 9 months I’ve become the expert on a condition I had only briefly read about before and the fear of missing something or making the wrong decision frightens me to no end. The only thing I can cling to is if God brought this little boy this far against so many odds he must have a great plan for him and I have to put my trust in that. My earthly hope may be running a bit low this week but my heavenly hope is not.
Could you pray with us for Caden? Pray that we will find knowledgeable doctors who will help us figure out all the issues going on. Pray that my stubborn little boy will decide to crawl and explore. And most importantly please pray for an adoptive family to come forward for Caden so he can get the best care possible surrounded by the love of a family.
January has been an exciting month for my home. We finally settled into a routine after the holidays and have been getting some good therapy time in for all the kids. All of the kids have made progress this past month that I want to share. Some of them have hit small milestones while some have hit bigger milestones but we celebrate them all around here!
Julie is a whole new child! If you had told me she would be crawling around and causing trouble back when I took her in July I would not have believed you. This past month Julie has began to be completely independent in feeding. She can correctly identify the color blue, count to three, and will say B if you say A. Julie will also tell you that her name is baby whether asked in English or Telugu. She is sitting up independently in a chair during preschool and will participate the entire time. Julie has also started asking and seeking out affection which is huge for her attachment. Pretty much this girl is rocking and blowing away expectations left and right!
Caden has a great first half of the month. He starts opening and closing his hands as soon as he hears Twinkle, Twinkle, Little Star during preschool. Caden started stacking blocks, turning pages in books when asked, and is getting good at doing the shape sorter. He is imitating sounds and signs and generally being charming. He was getting really close to crawling when he got sick and ended up in the hospital. He’s out now and doing better so hopefully the crawling will come soon! Caden will scoot himself around in a circle with his hands while sitting up and attempts to get toys out of his reach so we do lots of tummy time to encourage him to crawl. Caden also started eating regular rice instead of mixey rice in January because he’s finally getting teeth!
Valor has made some great strides with communicating recently! I’ve started using a two-sided communication switch with him with the options of more and stop. He has used it to request more swing on a couple of different occasions. We’re still trying to work through some of his physical limitations to figure out what the best way for him to communicate is but we made some great strides this past months towards finding him a way to communicate with us!
Penny is right on the cusp of starting to communicate as well. We’ve been working on a couple of signs over and over again. Hopefully with the repetition it will all click and she will start signing soon. Penny has made some good progress this month with touching new textures and she recently crossed midline for the first time!
Katherine‘s main progress for the month is that she is getting her cochlear implant! She got approved for a free cochlear implant so once we raise the surgery fees we can schedule her surgery. I’ve also started doing some vision therapy with her. Her new favorite thing to do is to lay under the box I made and look at Christmas lights. She will instantly calm down if she’s crying and stare at the lights all afternoon if I let her.
Thomas started physical therapy this month along with all the other kids. We got a great new physical therapist who assessed all our kids and is making therapy plans. I’m hoping she will be able to stretch out his muscles enough so that he will be more comfortable!Darren has started to learn more of his alphabet and can now count up to 5. He knows all of his colors and has became a really great helper with all the younger kids. Darren can write some of his letters and is hopefully getting ready to start school in June!
In the month of January we also switched over to cloth diapers. The transition has been way smoother than I imagined and it has been saving us a significant amount of money! I’m still working out some of the kinks with leaking and the best way to get them clean in our current set-up but so far it has been mostly good.
We ended January on a great note with my sister Shelby coming to visit. We’re looking forward to February and all the exciting things that are planned!