One of the followers of this blog had a few questions about caring for Lily and whether or not she receives any therapies, medications, has feeding issues, etc. In choosing to write this blog one of my main goals was to help others, so I am going to try to answer these questions as best I can....
At approximately 4-6 months of age I think it started to sink in to us that Lily would require some type of therapy in order to keep her developmentally where she should be. After doing some research I contacted early Intervention Sevices through our county and arranged an intake for her. She was evaluated by a team including (physical therapy, occupational therapy, and speech) and determined to be in need of all of these services with the largest concern being physical therapy.
After several sessions which thankfully were performed at her child care center (more about this later....) we determined she could be discharged from OT and speech, but PT was still required. Children who have multiple open-heart surgeries tend to develop their upper body strength at a slower rate than heart-healthy kids. This is defenitely something we saw in Lily as well. Having spent so much time on her back healing from surgeries, she took longer to roll over, push up, etc. She also had quite a bit of difficulty with her early walking skills as she was NEVER a "traditional" crawler. Her idea of crawling was scooting around on her bottom to get everywhere she needed to go :) She did finally begin walking at 17 months of age.......
Eating is also something we have struggled with over the years. Lily is by no means a good eater even at age 5. She is extremely picky, and also has some issues with textures of her food (if something is too hard, too many ingredients). For example, she will not eat pizza because she doesn't like that the cheese, sauce and bread are all combined and she can't separate them. She has trouble with soups because she picks out only the veggies she likes and won't eat the rest of the items. She also has a pretty bad gag reflex, so if she sees something she doesn't like or puts something in her mouth that has an unnatural texture, she will start to gag, and then either throw-up or not want to finish the food. I have gone back and forth in the past with taking her to a feeding clinic, trying medications, etc but she does manage to eat enough to meet her caloric intake and grow. She also takes a daily multivitamin which has helped. So, we try to avoid any additional services if they are not truly necessary :)
As far as medications go.... Lily is currently only on one, Enalapril for her blood pressure twice daily. There was a time that she was on 6 medications including: digoxin, captopril, lasix, reglan, lovenox injections, and propanolol, but thankfully we have wittled those down with completing all 3 staged surgical repairs. Lily does have a history of cardiac arrythmias, and we have gome through the gamut of medications in the past to control these, including amiodarone (will discuss more in a later post....). She had a pacemaker implanted in December 2006 to counteract the low heart rate (bradycardia) associated with the amiodarone usage. That pacemaker is still in place and evaluated on a 6-month basis, but she is currently not using it much :)
-Julia
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