Thank you everyone for your words of encouragement. I really need some type of support system. Most of the time this journey feels very very lonely. I have the support of my church and many of the people there have been very kind and helpful to us but I still feel like they can't relate. Unless you have been through this journey you do not understand fully. I know you all can relate to this. I also want to add that even though I am feeling overwhelmed and stressed out about things lately that I really do love Liliana. It just bums me out when I think of how much she has been through and how much she has to struggle. It doesn't seem fair to her. I still question," Why does God allow these things to happen?"
My post yesterday was very harsh sounding and I apologize but I just needed to vent. I also was extremely tired yesterday since Gwynny woke me up at the crack of dawn. She has a very rude way of waking me lately. It goes something like this, "Ahhhhhhhhhh! Ahhhhhhhh! Ahhhhhhhh!" Just constant screaming! It is soooo annoying. I am trying to teach her to be a little more considerate of others especially when you want to get their attention. She is having a rough time lately as well. I know this past year hasn't been easy for her either. She was shifted all over the place from Grandma and Grandpa's to friends houses back to us while Lily was in the hospital and that is hard for a 3 year old. I feel like I have been neglecting her needs in a lot of ways. Ironically, she has problems with eating too much and it has become a major issue in my house. I calculated how much she ate the other day and she was up near 1500 calories for the day. I looked online to see how much a child that isn't very active and age 4 should be eating and it said 1200 calories. Whoa! So this concerns me. I have been trying to cut back on what she gets and give her more healthy alternatives. I also may take her into the doctor because I am concerned there may be some underlying problem such as inactive thyroid or juvenile diabetes. Bill and I were saying that we have two kids with eating problems both on totally different ends of the spectrum. One eats too much and the other doesn't eat enough. I also in my spare time (what's that?) have been looking at preschools for her to go to starting this fall. I actually think I found one and I think I am going to send her 5 days a week instead of 3 since she is very head strong and does not like to sit down with Bill or I and work on different skills. I hope this isn't too much for her. I think it will be good for her to become more independent and in the mornings I can focus on Lily's issues and if she has any doctor's appointments I can try to do them in the morning. If anyone has any feedback about preschools or how much you should send your kids I would love to hear what you think.
Well, as usual I have to get moving so I can be ready to take Lily to outpatient OT this morning then hopefully this afternoon we can go to the pool for awhile since it has been very hot here this week. Lily did get the ok to go in the pool yesterday when we were at her follow-up appointment with her GI doc. Also she is scheduled to get her tube changed to a button on August 11th. So we have a few more weeks of dealing with this crumby tube but I know it will go fast. Oh, and she is now graduated to Pedia Sure. Hopefully, she will tolerate the transition from formula to that. I am trying her first feed right now with it. More to blog about later...
7 comments:
Your little Lilliana is beautiful! I wish sunnier days ahead for you and your family. It's hard to juggle health problems with a baby and manage a toddler's needs. Hopefully preschool will be a fun and structured environment that will help your toddler.
I'm sure little G will love school no matter how often she goes.I am glad to hear that you seem to be feeling better today, and don't apologize for sounding harsh b/c you know, life if not always easy and we all have the right to feel that way sometimes, it's reality and at times it does suck!...and we know that you love your kids dearly
Kim - You're right... you're not alone. But I know that it feels like that sometimes. We too have great friends at church but no one in real life who "gets it." I think the feeding tube is especially challenging and most families with kids with Ds don't have to go through that long-term. It stinks to have a baby that you can't feed "normally."
Congrats on Lily graduating to PediaSure. Micah is still on Neocate. Yuck!
Regarding preschool, I think it will be a good thing for Gwyneth to have "her own thing" that has nothing to do with Lily. Nathan is going in the fall too (he turns 4 in Sept so misses the cutoff), but only 2 days/week for 2.5 hours. It's a great school, though, and they offer extended care so that I can drop him off early or pick him up late depending on the babies' nap schedules and Micah's therapy appts.
Kim, I'm so glad you shared what you did. It is hard going through all of this. My prayer is that you will feel God's grace in the moment.
I'm glad you are feeling a bit better today.
I think preschool is a great idea! Caleb started preschool when Joel was just a few months old. Caleb was only 3 at the time and went 2 mornings a week. This past year he went 3 mornings a week. I think he could have gone 5 mornings a week no problem. He loved it and I loved it. I was able to schedule all of Joel's appointments while Caleb was in school which was so great. I didn't have to worry about entertaining 2 kids at the appointments and Caleb was having fun and learning things rather than sitting and waiting for his brother.
I hope you continue to have a better day and I hope Lilliana does well with the PediaSure!
My blogosphere buddies are amazing. I am constantly surprised at their understanding, advice and support.
Lilliana is so cute, I just adore her little face!
Although I was able to meet you, a good number of the blogs that I follow and am inspired by...I've never met them. When you have a special needs baby whether you meet or not, you just "get it." We all know how much you love Liliana, but we also all know how hard the road you are on actually is. We are here to pray with you and for you. Your little Lily is gorgeous and her sweet little smile melts me heart.
As for preschool...it will be great for Gwyneth to go 5 days. She will make friends a lot easier if she's there on a regular basis. KiddieKollege in Avon/Avon Lake has a really good reputation also the preschool at LCCC is unbelievably good, AND gymboree (sp) might be something you're interested in. I think the one in Westlake has had good reviews.
Hi ... I just popped over to your blog from Narretto's. :) I wanted to tell you that I had a typical child before my daughter with DS was born. I now have two with DS, the second through adoption. I do sometimes feel like my typical child gets left out of the attention game, and because of that we have talked about formulating date night with our kids. For example, every Wednesday night, you would take one child somewhere and your spouse would take the other child, and then the next week you switch kids. That way you are giving them each one on one time, just you and them. Or even involve a grandparent into the schedule.
Ok, those are my two cents for the day. :)
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