I haven’t wrote an update about my daughter in a really long time. I think about it often, but sometimes shy away from sharing. The fact is, she really is doing excellent overall, but there are many challenges that come along with Sickle Cell Disease (SCD) that I did not foresee.
Regarding her overall health while living with Sickle Cell:
1. Although winter was rough, she still hasn’t had a crisis. I continue to keep her home away from daycare, and I am a little cautious about putting her back into a public program. I long to send her to a summer camp, but I am hesitant because when I placed her in gymnastics this past winter she stayed sick with a cold that turned into pneumonia. She also was exhausted from the routines, but thrived on the social interaction. I hate to see her ill, so I chose to take her out of the program after speaking with her pediatrician.
2. My biggest worry recently has been regarding her teeth. I had no idea she was going to have dental problems, but I talked with her hematologist about it and he assured me that the two problems can go hand-in-hand. Unfortunately, she has cavities. I am a stickler about her brushing and flossing so it was hard for me to understand when her recent check ups revealed that she had cavities. I don’t allow her to eat unnatural sweets. I give her fruit and plenty of water, but the problem still exists. Her twin sister, who doesn’t have sickle cell, has not had any cavity issues and is allowed to have more sweet options. Overall, dental care is costly, even if you have a very good private health insurance. My new method to combat her proclivity to have cavities is to brush her teeth after all meals and snacks.
3. She continues to be tired often. For the most part, she is a normal 4 year old. She loves to sing, dance, clean (yippee), and read. But she really can’t handle too much stimulation at one time. The great part about it though, is she is good at taking a break when she needs to. While her sister is extra active, but I can often find my daughter with SCD napping after playing rigorous games. I encourage her to have fun and socialize, I take her to parks, library programs, and clean gyms and play areas, but I have to always keep my guard up.
4. During the summer months I have to keep her well hydrated. Thankfully, she understands the need to drink water. I also make fresh organic smoothie drinks for her. She continues to eat plenty of folic acid through green leafy vegetables, avocados, broccoli, and legumes. I try to give her vegetarian foods rich in iron such as brown rice, pecans, almonds, multi-grain pasta, etc. Her diet is a really big deal in our household and limited processed foods even within her snacks is a struggle, but important to us.
5. It is also important for me to nurture her self-esteem and emotional health as well. My daughter, just like every other kid, thrives on positive praise. She is very sensitive and will cry when I give her a stern look, but constantly giving her the love and attention she needs is extremely important. She needs to always know that she is beautiful, smart, funny, and healthy despite the disease is important.
Over the summer, I let her go swimming and play in water once in a while, I just keep a close eye on her and make sure the temperature is warm enough for her body. It is hard for her body to regulate it’s temperature so moderate-to warm water is best. My approach is not to restrict her completely, but to make sure that she is not overdoing things. Therefore, I have not signed her up for swimming lessons; although she is begging me too. It has been 4 years and so far doing things in moderation is OK for my daughter and her health. As a parent of a child living with Sickle Cell Disease, continue to be aware of what is going on and try to keep the communication lines open, so your child will let you know how he or she is feeling at all times.
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It was a cool autumn night beside the ...