Tuesday, November 24, 2009

Home from Ultrasound and Doc

This morning was our 36 1/2 wk ultrasound and doc. It was definitely not good. Mr Eli has only gained 3 ounces in 3 weeks, which is obviously a huge problem. His kidney has also enlarged some more, now up to 2.3, and the other biggest change is my amniotic fluid has gone from 14 to 23.5, which is now way to high. Dr J thinks we are pretty much hitting the point where Eli is going to be better out than in. He wants to simply get to 37 weeks, so he called the hospital and they have me schedualed for Tuesday Dec 1st, check in at 6am. I will have an induction and assuming his lungs look OK I will be immediately induced afterwards. Nobody knows what to expect as right now Eli only weighs 4lbs 13oz. Dr J thinks the massive amount of amniotic fluid is what is causing the major pain and cramping in my back and stomach and some of the discomfort with taking deep breathes. He thinks the placenta simply isn't functioning anymore like it's supposed to.
I'm numb and freaked out all at the same time. I have so many things I still need to get done. I'm not even sure how to prepare or what to prepare for as we have no idea what to expect after his birth. It's going to be a long week and a fast week all at the same time.
I will update more as we know more, and I promise to get some new pictures up of the kids over thanksgiving.

Thursday, November 19, 2009

Quick Updates

Tomorrow is 36 weeks pregnant! Thank heavens I'm nearing the end. I've been having alot of pain and discomfort the last week or so. My doc is almost positive it's from my surgery and there is nothing that can be done about fixing it but delivery. I'm just focusing on getting thru each day and getting ready for Mr Eli. Today I decided to get all of his clothes and things washed, and tomorrow I am hoping to get the last of the shopping done. I don't have much left, but I will feel better when it's all done! We have our next ultrasound and doc appt on Tuesday morning so we will know more then!

The kids are doing pretty good! Emily has decided to join TKD and they were able to get her started this coming week instead of her having to wait until the beginning of next round. She's super excited to get started. Jace is still loving it and is excited for Emily to join him so he'll have someone to practice with! Benjamin is busy with school, and is learning to write his full name. He's asking alot of questions lately including why his name has so many new and weird letters! :) Ariana is in the middle of testing for her IEP. She had her 1st round this last Tuesday and did really well. She will have more the week after Thanksgiving!

Other than that we are just getting ready for the holiday and Mr Eli. I will get new pictures up this weekend and hopefully some photos of the house! Super behind on that!

Saturday, November 14, 2009

My Literal little boy

Mr Ben has always had trouble understanding meanings and hidden things and takes everything very literally. It's all taken at face value and if that's what he sees or hears then it's set in stone that this is how it is. We left our house this evening to head to my parents for dinner. I just had the little 2 with me as the older 2 were already over there for the afternoon. As we were loading up the church by us had their church bells going. Ariana stops and asks what this is. Ben looks around and informs her that it is music from Santa's workshop. She's completely happy with this answer. We get to my parents and the kids want to watch a movie. So my dad puts on the 1st Santa Clause movie with Tim Allen. Ben watches the 1st few minutes and comes into the other room with mom and I. We were discussing christmas presents and asked him to go back and watch the movie. He informs us that he doesn't need to. Santa's Dead. We attempted to explain that he needs to actually watch the whole thing and that santa isn't actually dead. He says nope santa's dead. In his mind the movie is complete and it's all over. It will be interesting to now see how the Christmas season goes and what he tells the poor unsuspecting children at school.
Oh and to finish off his christmas discussion. Mom was asking him who's birthday is at christmas, as they were talking about church and such. Benjamin looks at my mom and informs him that it's baby Eli's birthday. He keeps asking us when Eli is coming and as an easy marker for him we just tell him at Christmas Time. So apparently he is now confusing all of these things together in his mind. Poor Ben. :)

Friday, November 13, 2009

Ultrasound Today

Today we had the ultrasound/biophysical profile. Mr Eli's heartbeat was 146, so again right where it should be. My amniotic fluid dropped from 17 to 14 BUT this is a small drop and completely normal for end pregnancy so no worries there! The good news is my little man is head down now exactly where he should be. We were all a bit surprised, because the hear really was that my muscles from surgery were going to simply prevent him from flipping. The bad news is his right kidney was now 2.1, the last ultrasound he was 1.81 so again it's enlarged more. (normal is 0.7) So still watching that. We will have another ultrasound in 1 1/2 weeks. So Dr J assumes that all the cramping and discomfort the last 2 days was from Mr Eli flipping himself into the head down position! Well worth it for that! So we are back to waiting but I'm sooo much more at ease simply knowing that atleast he's head down, so that cuts the c-section out of the equation!!! YIPPPEEEE! Oh and today is 35 weeks..time if flying!

Thursday, November 12, 2009

Last Minute OB appt

I ended up with a last minute appt today at the OB. I woke up this morning feeling really crampy. As the day went on the cramping got a bit worse, especially in my lower back and I had alot of pressure. Dr J had me come in. Eli's heartbeat was still good at 142, but it was located this time on my left side about halfway down my stomach, which is competely different than before. So the question is did he try to turn and got stuck so that is why I'm having so much pain and discomfort and cramping. Dr J is concerned that if his kidneys have swelled more and are having a harder time functioning that will cause my amniotic fluid to decrease which will make it harder for him to turn. So tomorrow he has schedualed a complete ultrasound and a biophysical profile. He wants a breathing score, full weight and size, full kidney assessment, amniotic fluid levels, etc...So we are hoping to get more info. In the mean time I'm supposed to relax and not do to much. Easier said than done with 4 small children, and an exhusband who refuses to stop harrassing me. :)

In other news we did hear back from Ben's school. She spoke with the social worker and she got some numbers she wants to call and see what kind of extra support we can get for him since he's struggling. We will be working with them and making some of these same phone calls as well, so hopefully we can get some answers quickly.

Jace is doing well. He had TKD again tonight and absolutely loves it. It really keeps him busy. He has his 1st round of testing coming up in December as well as a family Christmas party. He's doing well in school, and has had a slight homework break so he's really enjoying that!

Emily is doing pretty good. She's been super busy with a research project. It was a pretty large project that has taken her the last 2 weeks. It's due tomorrow and she's really glad that it's going to be all behind her! Now to go back to focusing on all of her reading projects and assignments!

Ariana is doing well! She's enjoying having her own girly room where she can play kitchen, dolls, and dress up. She begins all of her testing next week for her Transition and IEP and I'm very curious to see how she does with it! She has great workers and a great time so I'm confident she'll handle the stress of it all well!

More updates tomorrow when we are home from the ultrasound!

Tuesday, November 10, 2009

34 1/2 week OB appt

Had my OB appt this morning. Mr Eli's Heartbeat was 144, which is good. The bad news is his head is right up partly under my right rib still. Not where it should be. Dr J had trouble feeling the exact positioning of the rest of his body as my stomach muscles are still sooo tight from my surgery less than a year ago. With my muscles being shortened and sewn together it makes for a whole different pregnancy situation. Dr J says he doesn't think manual turning would even be possible with how my muscles are, not that he's willing to do that anyways. We don't have any more updated info on his kidneys or his weight until my next appt/ultrasound on November 24th. Dr J says if at that point he is still breech then a c-section will be schedualed. For those of you who know the M & M story, Dr J said he forgot to tell us that Peanut M & M's are the only ones that work! :) gotta love him! In other news I've shrunk 3cms in the last 4 weeks, so not sure what that is about, just soooo hoping that Eli is still gaining good week. Anxiously awaiting the next ultrasound.

In Benjamin's world. Finally got a call back from his teacher, who is putting out the word to his social workers and we are going to find who in the community is will to take on Ben's case and get some plans figured out. The only changes at school his teacher said is that they stopped using his individual TEACH scheduale and he is using the class scheduale only. She says he seems to be doing well. She is at just as much of a loss as we are, so hopefully with everyone involved we can figure out what is going on. I love him to death but I SOOOO exhausted. Yesterday was a day of questions and he obsessed about them most of the day. We spent large quantities of time yesterday discussing what bug eats paper. He wasn't happy with any of our answers and we were never able to figure out what he was wanting. He is now sleeping in the loft right outside of our bedroom where we can constantly keep an eye on him, his privacy has been completely taken away and he has very minimal things, and someone is constantly following him around. It's rough on everyone but we don't know what else to do right now. We can't have him hurting himself, or his siblings, or burning the house down.

Thank you to everyone for the kind words, emails, posts, and offers of help. I've been super slow to respond, and I know even when I have it's pretty vague. Unfortunately we don't know what we need for help. It's a constant and hard to say what would or wouldn't help. So if we don't respond it's not that we are being rude, we just have no idea right now. It's basically daily survival mode.
Love and hugs to all!!!!

Sunday, November 8, 2009

Jace and Ben updates

Jace had his surgical procedure done on Thursday. He did well, and came out of anesthesia so much easier this time than in the past so that was great as well. She checked out the esophogus, stomach, and small intestines. All looked good, and she took tons of biopsy's from each area. We will obviously not have those results for a few days. His valve is finally closing on it's own so that is also very good as well, as at his last testing it wasn't. She thinks we are dealing with CVS. She is keeping him on his prevacid, but lowering it to once a day, and she is adding another new medicine to help with the CVS. Before starting his new med, he needed to have an EKG and we go those results back late Friday, and they were good. So we will start the new med tomorrow. We went down to the 1 prevacid a day and the throwing up has already restarted so we are hoping the new med will situate quickly.

Benjamin has been a disaster. He has gotten a hold of crayons, pencils, pens, emilys nail polish, lipstick, and a glue stick and completely demolished his bedroom and 2 bathrooms. He completely covered the bathrooms and 1 of Ari's toys in water. We can't figure out where he keeps finding all of these things and what to do about it. It's a constantly struggle with him and he's constantly getting everything and destroying everyone's things. Then last night he pushed Ariana down the stairs and turned the lights off on her. She of course wasn't thrilled. Today Bob and I decided we needed to AGAIN rearrange the bedrooms so Ben would have minimal things and was where he could be supervised constantly. We were upstairs getting a few things done and kept smelling something burning. We all started roaming around the house trying to figure out what was going on. Ben had taken a huge wool pom-pom and had thrown it on the 100 watt light bulb underneath the lamp shade. It of course was on fire. Luckily we found it before it was able to spread any more to the entire rest of the living room. We are going to have to be calling EVERY one of Ben's workers tomorrow, as we need help. We've got to figure out what to do. I can't keep following him around constantly, and having him hurt people and potential endanger the entire household. I'm just losing my mind dealing with the constant problems with Ben, and so is everyone else in the household.

Tuesday, November 3, 2009

Such a busy week

This week is HUGE. We have sooo many major things going on this week. It's a bit overwhelming.
Ariana has transition meeting tomorrow. This is where we will begin discussing her upcoming 3rd birthday. She will begin full evaluations and testing again at the end of this month to determine specifics, but we will begin discussing what we all want written in her 1st IEP. They know for sure her diagnosis of Sensory Integration Disorder will stay, and we will continue receiving speech and physical/occupational therapy. We are hoping to be able to get her into a preschool setting 2 days a week and obviously her additional therapies. I'm not looking forward to going thru the entire IEP writing process again as it is exhausting and frustrating. Hopefully it will go smoothly.
Jace has his surgery schedualed for Thursday morning. We check into the outpatient surgery center at St Francis at 9am. He's not really looking forward to it obviously. They will do all of his biopsies so we can again verify that no cancerous cells are showing up in the esophogus. In addition she is going to be checking and testing all the valves as she's considering changing his diagnosis now from GERD to CVS. So we are looking forward to the results and hopefully getting situated on some new meds that might work a bit better. Right now we are on limited dairy of all sorts again and that definitely seems to help but the stomach aches and headaches definitely haven't gone away. After dealing with this for 5 years he's pretty easy going about it all, but the older he gets some parts of it do definitely bother him way more than they used to. He will be missing TKD on thursday and isn't happy about that. He's loving it and it's kept him super busy! We will definitely be continuing it next round!
Benjamin is doing pretty good. He like always has his days. He's doing pretty well at school and really getting into the groove a bit more this year. He's working a bit more on his academics and lots on his social. They've been doing alot more in classroom speech times to really push him to talk and interact with the other kids. he's still using a full TEACH scheduale at school on the door and she's now doing a portable TEACH scheduale for centers and such. We are hoping to switch over to the portable scheduale completely by next year as we think this will make the kindergarten transition easier. We are still dealing with alot of temper issues and obsessions with him at home which are beyond exhausting. Right now the biggest obsession is hugs and kisses for the kids when people leave. This usually takes 15 to 30 minutes depending on his mood because he must see everyone give each of his siblings both a hug and kiss, which usually takes multiple tries. He also does this randomly if we take a shower, or go to the bathroom, or step outside to take out a bag of trash. Many times when company leaves he will continue screaming for 30 plus minutes claiming he didn't see Ari get a kiss, or something like that. It's exhausting and makes goodbyes very long. We are hoping he settles a bit before the new baby. He is going to be going for another round of full testing the end of November. He will be getting fully evaluated again and doing all the IQ testing etc. This is hopefully the last process for his social security application to be accepted.
Emily is doing well. She's incredibly busy with school. The farther into the year the busier she gets. She's doing her 1st little research project right now, and that's been using up alot of her free time. She's enjoying the work and the reading though so that is good. Her battle of the books program ends in a few weeks and she's definitely not thrilled about that part. Bob has been teaching her to knit so that will give her another new hobby to pick up until her next school program begins, not that she will stop reading!
Bob and I are doing well. Just trying to keep up with the kids and life. I'm super pregnant and exhausted and not sleeping that well. So that obviously doesn't help. More updates soon, especially after Jace's surgery!