Wednesday, January 27, 2010

Hearing Tests

Nathanial, Ethan, and Noah went in for another follow up hearing test this morning. Last time, Noah really didn't do well, Ethan did not pass and Nathanial heard enough tones to receive a "pass" but missed a few tones. Since then, Noah and Ethan have had a new set of tubes put in and adenoids taken out (which Nathanial had done two months prior to the last hearing test); so we wanted to see if that would improve things a bit.

Noah did fabulous! He got to take the "big boy" hearing test, which involved wearing headphones, listening for tones, and placing a block in the basket when he heard the tone. He heard all tones today and both tubes were in place and open. He passed, but the audiologist also wants to be cautious, so he is to go in again in three months for another follow up - to be sure his hearing stays good and make sure if the tubes fall out, we catch it quickly enough that we are not messing with his speech too much. I haven't noticed a huge improvement in his speech since the new tubes were placed. He did then and still does, talk A LOT, but he is very hard to understand and that hasn't changed much. At least we know he is hearing, so we can still work harder on speech therapy. It appears that he learned to say things incorrectly and is now having a hard time breaking the habit.

Ethan was next and we tried the "big boy" hearing test, but that didn't work with him. We couldn't tell if he was overly anxious about when to put the block in or not, so we went back to the other way. He also didn't do well with that. So, we have a few options here. Either he has a permanent hearing loss in his high frequency range (which is what we thought last time about all three) or he has "mixed hearing loss" which is permanent hearing loss due to many ear infections/fluid being present constantly (entirely a possibility) or he was tired/stubborn/anxious and just didn't want to cooperate any longer by the time we got to those tones. His tubes were in place and clear, so fluid is not contributing to the problem at this time. When we return for his three month check, we are going to start with the tones he missed today (and last time) to see if that makes a difference. Then maybe we will have more answer....but as I am learning, this is on a constant curve, so we may not know for a long time! The good news is, he did hear in a speech range, so whatever kind of loss he's experiencing today is not affecting his speech ability or learning.

Nathanial went last because he didn't get new tubes in and his tubes were still in place and clear. He did very well with the "big boy" test, but still missed a couple of tones. His was also in the high frequency range. The plan is to continue to watch that and monitor it along with Noah and Ethan.

All three boys were very cooperative and well behaved. They waited well with Daddy and were excellent back in the booth with me. They are getting to be such big boys and I am so happy that they are getting a smidge easier to take out. It also helps when we do things in the afternoon, they tend to fall apart a little easier!

Part of the hearing evaluation was being done today in preparation for their IEP's, which are being written on Friday. We learned yesterday that the gentleman we had a LOT of issues with with Austin and trying to get him an IEP will be at the meeting on Friday. I need a lot of prayer to hold it together and know that this is a whole different situation and trust that he is not just on a rampage to destroy our family's education (which, OK, so it sounds a little far-fetched, but trust me, this man did NOT like Steve or I at all by the time we were done with Austin's meeting and the feeling was pretty mutual). He was not very educated in IDEA laws at that time and not at all compassionate. I'm hoping he trusts this time what our therapists have to say and that this is a smoother process since all three boys already have an IFSP. Again, prayer would be greatly appreciated!!!

The LORD gives his people strength. The LORD blesses them with peace.
~Psalm 29:11

Friday, January 22, 2010

Praise the Lord!!!

{l-r Hannah at the beginning of the journey in September and Hannah now}

Hannah went back to Iowa City today for another follow up with Dr. A and Dr. V. It was awesome!!! She is just doing amazing.

When she started this journey in September, she was 26.4" long (had not grown in length since June); her head circumference was 16.9" (had not increased since at least April); and her weight was 14 lbs, 2.5 oz (very slow gain, if at all) and her BMI was 14.3. She was well below any percentiles on the chart and, if you are familiar with BMI, that is well below a "healthy" number (normal is at least 18.5 and anything below 19 is underweight). She grew and grew and grew and NOW her numbers are so much better - it is sooo exciting! Her height today was 29.2" (that is almost THREE WHOLE INCHES in four months of the feeding tube!!!!!!!!!) and she is at the 8th percentile for her length compared to SAME AGE toddlers!! Her weight today was 19 lbs, 9.6 oz (that is FIVE and a half POUNDS!!!) and she is almost 3rd percentile....definitely within spitting distance! Her head circumference was 18" - almost TWO INCHES and puts her at the 30th percentile for her AGE!!!!!!!! That was a HUGE jump, especially since her head had not grown - at all - since at least April!! Soooo exciting!! Her BMI today is 16.15, which is still technically 'underweight' but definitely not as alarming. The most exciting part for me is seeing how she is doing on the overall chart...where she lands for her height and weight, irregardless of age (in other words, with peers who are the same length/weight combo as her, but not necessarily the same age) and that was slightly OVER the 25th percentile!!! And she did ALL THIS in only FOUR MONTHS on the feeding tube....God is soooo good. With phenomenal numbers like this, it is impossible to ignore the miracle of the Great Physician's Hands and to Him goes ALL the glory!!!

When we first put the tube in, both Steve and I were under the impression (prior to hospitalization) that it was a very short-term solution and would be completed within 6-8 weeks. We were told something quite differently when we actually were in the hospital and spoke with the doctor and dietitian. They both told us at that point that 6 months was way too optimistic or even realistic of a goal, but we could shoot for it as long as we were not disappointed if it didn't come out then. They both felt that, realistically speaking, she would need the tube for at least twelve months and probably more. We went with that because they are the experts and the ones who deal with these babes all day, every day. So that has been our goal this entire time - get it out in twelve months, but if she wasn't ready for it to come out then, then we would be OK with that. When we got home and I researched it, we found out it was a very real possibility that she would never outgrow the need for supplemental feeding and may eventually need a g-tube (one that goes directly into the tummy). It is super common for babes with reflux and other issues that cause growth problems. I was not willing to accept that for Hannah, but it has always been in the back of my mind. Now, though, we were told that if we wanted to do a trial run without the tube, with the knowledge that if she didn't do well it would go back in, we could try it. Dr. V feels that Hannah has probably recovered all lost weight, length, circumference, but there is a small possibility that Hannah has more growth in her. Because of that and because Hannah is just now starting to really do well feeding orally and on her own, we decided to hold off. So the new plan is to see if we can recover any more growth between now and April 2nd and at that time, wean off the feeding tube completely. That is just astounding to me....that in less than six months, she may be done with it! Again, all glory to God who has healed her!!!

Hannah has done so well through all of this that Dr. V actually uses Hannah in her lectures! She said a lot of the medical community still believes that lack of normal physiological growth (aka failure to thrive) is always due to neglect on the parent's part. She said that she uses Hannah constantly now to prove that when parents are willing to do whatever is necessary medically, are intelligent and on board with doctors, instead of bucking them the entire way, that great things can happen. That is still not to say that all children with LNPG are all products of parents that aren't on board, either. She just said it is much easier to prove that this can happen to normal children in a healthy family and parenting situation and when everyone works together for the good of the child, amazing growth can happen. She said often parents are so angry when it is suggested and refuse to do it, so then DHS ends up getting involved and then parents won't do what is necessary for the child, either, so then they don't end up growing either. She said that she can tell with 100% accuracy that Hannah's issues are completely related to reflux and not at all related to "social issues." It was very vindicating to hear that from a doctor and she kept telling me what a great job I was doing and that I deserved congratulations, also, but I am only doing whatever is in my power to do for Hannah as her mother and praying over the rest of it so that God can restore her health in ways that only He can. It breaks my heart that there are parents so angry at "the system" that they fail to see what is necessary for their child. This was not an easy decision for us to make. This was not easy for me (or Steve) to hear that it was needed. It definitely seemed radical at the time. However, God gave me a great peace about it all when it became obvious that it was needed and He has since showed me over and over that we made the right decision for Hannah. And that's all I wanted...was a little reassurance that we didn't go outside His will through all this and we were doing what was medically needed through the doctors.

I am so excited to see the amazing strides Hannah has made. It just leaves me in awe of what is possible!!

Friday, January 15, 2010

Delurk for Haiti

I have been struggling with what to say about Haiti and I came up with something earlier, but that will have to wait. I have been praying for all of the people who have died or been injured or were in Haiti at the time of the earthquake. Praying for all of the rescue workers. Praying for understanding, peace, and God's love to shine through this disaster. Then I came across Brittany's post this evening (at 4 Little Men and Girly Twins) and I thought this idea was brilliant.

Here's the plan:

For every single comment I recieve on this post, our family will personally donate $0.25 to a rescue effort (most likely World Vision, but if our church starts a fund we may choose that one...I'll let you know what where we are giving after Sunday services) to help the people of Haiti. If you visit 4 Little Men and Girly Twins, you can comment there and follow other links to comment. Imagine the impact we can make!!

So, if you've never commented here - or if you do all the time - NOW is the time to comment!

Chuck E Cheese Fun!

I always try to take the kids to Chuck E Cheese once a year during Christmas break and this year, I knew it was going to be a challenge. Thankfully, Nicole was more than willing to go along and was an awesome help to keep track of everyone, plus be someone for me to talk to! We had a ton of fun and I am so glad we went. The boys are getting better about staying near by and staying together and Austin and Aidan are old enough to play games together away from me.

{This horse was a huge attraction for the triplets. I really didn't think they'd stay on, but they loved it!}

{Everyone had lots of fun doing lots of different things!}

{They also enjoyed the small carousel - to a point, then Noah wanted off!}

{The highlight of their entire time was dancing with Chuck E Cheese}

{Nathanial and Noah loved riding in the car with Chuck...and Hannah wasn't about to miss out!}

Monday, January 4, 2010

Family Christmases

Christmas has been a lot less stressed since we started staying home on Christmas Day for our own family and doing our extended family on weekends surrounding Christmas. This year, we had Steve's side first and enjoyed ourselves. It was fun to see how much better Hannah is starting to get to interacting with Kendra...they are gonna need to stick by each other as the only girls in a sea of boys!

{Hannah looks like she's telling Aidan something, which I loved;
Aidan and Kendra help Hannah open a gift.}

{Aidan's - and everyone else's! - favorite gift of Christmas by far was this guitar!}

{Everyone diving in to different's hard to keep track of it all anymore!}

We then returned to Dubuque for a weekend to have Christmas with my mom and grandparents and my dad. It was a busy, but very fun, weekend!

{Granny and my mom with Hannah - I love these pictures!}

{Chris, solidifying his place as favorite son in law with the Lukken-making!}

{There are always plenty of presents!}
{It has become a new tradition that Austin helps Michael pass out gifts.}

{Plenty of time for lots of fun after gift opening and eating is done!}

The next day, we had Christmas with my dad at my sister's house. It was a fun and relaxing day that went by all too quickly. Unfortunately, my camera battery died and I did not bring the charger with me! I didn't get very many pictures, but love the ones I did get!