Thursday, September 5, 2013

things aren't bad :)

Last night before I went to bed I read a blog post by the "heavenly housemaker". The gist of it was, don't be so hard on yourself, you are not perfect! That was my take away at least.

Today was hard, yesterday was hard as well. Thankfully, it is not Simon that has been the difficult one. I am praying the Lord will keep giving us strength to give Ishmael the attention he needs to adjust to his new life with a brother. Don't get me wrong, taking care of Simon can be tiring, but in a different sort of way. Ishmael has been pushing all of our buttons while simultaneously peeing and pooping through 2 car seats and a couch. FRUSTRATING. (he was fully potty trained while we were in Buglaria...not so much since we have been home) Simon is just sort of a guessing game, all the time. Simon can't communicate with us, at least not in a way that we understand. So that means that we are trying to read between the lines, but not too hard. We try to give him space, but not too much. We want him to eat, but not force him too much. We want to be challenging him, but not too much. And lastly, we want him to get medical care.....but not too much! (see a pattern here?)

I read A LOT of blogs while preparing to bring this little boy home. I paid attention to struggles and victories and I tried to mentally note what worked for Pleven kids and what didn't. Yes, we did all of the adoption trainings but those trainings weren't tailored made for kids this neglected. However, thanks to the miracle of the internet, I was able to be in touch with people who were ahead of me in this game. In a lot of ways, the blessing that they were to me is the reason that I am still blogging about my journey. I know how much it helped me...so I really do hope that our victories AND our struggles will help others.

All in all, I try to keep myself focused on the fact that things have really been going very well, all in all. Simon has been eating. Yes, we have had some days where it was hard. YES, it takes 1.5 to 2 hours per feeding BUT we are getting him a little over 1,000 calories per day. (we had a goal of 1500 before and the pediatrician's office did some research and told us to back off ) Due to Ishmael's first months of life, where I felt that I was forced to go in and have him weighed, repeatedly to test my milk supply, I am a bit touchy about doing weekly weigh-ins. HOWEVER, we took him yesterday for a weigh in one week after his last and he was at 21 pounds and 5 ounces. (last week he was a little heavier, however he had not been pooping at that point...so I am NOT worried in the least :)...see glass half full!!!)

What are we feeding him you might ask? Well, I made him 2 mixes for today...
1- banana
1-avocado
1- a little organic packet of apple mix (a sample that my neighbor gave me)
1/3 cup coconut milk
3 scoops specialized formula (for all his vitamin needs)*
1/2 scoop of chocolate flavored whey protein powder**
This mix had over 700 calories

2- peaches
3 scoops formula
1 Tablespoon coconut oil
water
This mix had around 300 (I don't have my notebook, I might not have listed something)

While it is a guessing game with Simon, and this might change, this week I decided that he likes to have at least 2 different tastes in each meal. So I have both dishes going at once but he has ALL day to get them down. I also think, that he likes to have one dish a little thicker and the other a little thiner. He also seems to eat well if you shovel in 3 bites of the thicker stuff and then wait for a while for him to clear it. (he still holds food in his mouth). The more watery stuff, I hold the dish under his chin and shovel that in until his mouth seems fullish, then move it out of the way of his arms. Simon's active arms making feeding time a bit of an Olympic event. You have to time it just right, read in his eyes whether or not he is going to open his mouth or smack the food away, spilling it all over, if you aren't quick. My hubby has taken to saying, "open" and has had success that way. I have been trying not to get to aggressive about holding his arms down or forcing food in, if he doesn't seem to be eating much anymore, I let him lay down for a bit, and then try again. We have ALL DAY anyways right? :)

*we were using a nutritional supplement called SP complete, however it seemed to really taste like vitamins. When he had a slow day eating, we switched back to the formula....I hope to work it back in on a smaller scale soon.
**we were using much more than this and his gas was so horrible, that we backed off, this yesterday he didn't have any bad gas at all, we will see what today brings to decide if we keep using it.

So the first week we had Simon we noticed that his stomach was really hard and large. I had originally thought it was because he was not having bowel movements, however, after we gave him a suppository, his stomach was still hard. Huh, then eureka, he had a HUGE burp, actually several, then his stomach went down. So my hypothesis was that he had gotten used to swallowing air because he wasn't getting fed enough... So, we have been trying to help him burp, but it doesn't seem to be as simple as just patting his back, although I still do it at times. I have found that when I put him in the boba carrier he seems to let it all out. He burps and passes gas. (I am sorry to everyone in our section of the church on sunday, I promise you, we have modified his diet, I am hopefully it won't be so stinky next week!) So I have wondered if it is because he relaxes??? He has also burped loudly in the car several times (he likes car rides), sometimes I will lay him down and then sit him up over and over and that helps him get the burps out as well. That is all we are doing to deal with this "problem" at this time. I am hopeful that he will stop swallowing air once he knows that he will always have food from here on out. And if not, I am sure that is something a therapist would love to help us with....once we allow them into our lives.

Yes, we are trying to take things slow. We figure that Simon has been through enough in his little life, we don't need to overwhelm him with lots of doctors and experts probing him. We have been BLESSED to get to follow this "plan". We had his heart checked last Tuesday....we LOVED his doctor and this office. I referenced before that I had written them a letter to prepare them for Simon's arrive, and they were AWESOME!!! I had been worried that no one would read my letter but I was wrong. So many of the staff had also read our blog! AMAZING. Anyway, his heart was repaired well...praise the Lord. We don't really have to worry about it until later...so that was good news. Sad that we won't need to go into that office very often, but we are also glad that we don't need to rush him into surgery. We do hope to get him a MRI of his heart, in about 5-6 months. Once we had this news, we knew that if we could keep him eating, medical interventions could be kept at a MINIMUM!! (my favorite level!)

He saw his pediatrician and she has been working to contact Katie Musser's doctors (Katie was adopted from the same orphanage and came home at 9 years old and 9 pounds) to ask them some questions for us about our game plan. So that sounds good to me. Tomorrow he sees the dentist. I find myself VERY nervous but also hopeful that this will go really well. We are getting to see the dentist that has come HIGHLY recommended from other special needs moms and Simon's doctor....so I probably need to stop worrying but this is Simon's first time to the dentist, ever, in his nearly 9 years of life.

He has an appointment set up to see the eye doctor on the 24th. We really want his right eye examined as it is cloudy....we are very interested to know what he can actually see out of it and if they would like to do surgery on it. (his left eye was operated on in Bulgaria)

I am guessing that both these doctors will want to put Simon under and I really am praying that we can put him under once and get both procedures done!

After we recover from those visits, we hope to get him a full body x-ray. Call me paranoid, but I want it documented if he has had any broken bones. (I do not want to EVER be dealing with CPS, so if a severely neglected child is going to live at my house, his condition is going to be DOCUMENTED!!) Also, we were told that the Dexa scan, to test bone density won't be ordered unless the x-ray shows that we need it. (I will need to research this...because I don't know much about that....if your child had a x-ray and then a Dexa scan, please let me know!) So whatever steps we need to do. I just know that Katie M gets iv treatments to help her bones and if Simon needs that to help him grow I want to know. I also want to know how careful we need to be with SImon. He looks pretty breakable....is he?

Well I think that has caught you up and I want some leisure time before I return home. (I was blessed with some time away, a friend came to play with Ishmael and Jon took Simon, so I went out for coffee!) Sorry no coffee this time. But next post might feature Simon's before picture and his stats, I will try to throw in a happy picture too, because the before picture is hard to see.

We are very very thankful for all the encouraging words and meals! THANK YOU!!!

4 comments:

  1. Look on the Musser's blog for how to lift and move the children from Pleven. I'm pretty sure Katie's mom did a post on that:)

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  2. OOOOOoooooooh! I'm so happy for you all to be HOME!!! (((HUGS)))

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  3. Anna, Katie did have an x-ray first when she was in the PICU right after coming home and they were the ones who told us we needed a DEXA. You guys are doing an awesome job! Keep up the great work!

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  4. I am following your blog closely... Trying to be prepared for what's coming up!

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