Wordless Wednesday - October Fun!

So far this month, we've had some attitude....
And we've had some mechanical fun...

And we've decided we don't like our picture taken; but will smile once...

When our sister gets to wear Baby Legs, so do we!!

(even if that means sometimes they are {very} pink)

We like to be matchy-matchy...

We love the fall and playing together!

Hannah and Austin and H1N1

Sometimes it seems life gets going and I forget to update...or I can't find two minutes in which to do an update. Last week was a crazy busy week.

Hannah has had her NG tube for over a week now and she is starting to adjust to it. She pulls it regularly at night, but she leaves it be during the day. She no longer has to use her arm restraints during the day and that is a huge relief. We got a lot of looks over that one, but it was the only way to keep the tube in! She started getting smart at night and she will wait until I am out of the room for a while and then remove her arm restraints. She does still wear them at night because otherwise she will pull the tube out. Most of the time she leaves the tube be, even without restraints on, during the night, but if she wakes up in the morning and is left alone, she will pull it. And she's getting very quiet in the morning, so you are never quite sure when she's awake and when she's asleep. My solution to that has been to get her up and out of her room as soon as I wake up. A few nights ago, she got very smart and we still can't figure out how she did it. She pulled her tube out - with both arm restraints on. I have no idea how she managed, but she did. The next night, she pulled it out, with restraints on, at the beginning of her feed. I went in like I usually do and checked her three times. I just checked to be sure it was still attached to her cheek, because she was kind of laying on it. She pulled it and I had no idea. I even went in and checked it again, plus then checked it when I disconnected everything and flushed her line. Steve woke up and went in to get her and her hair was matted to her head and her jammies and sheets were full of Pediasure. I now turn her over when I go in to check on her to be sure it is still in place.

Other than the fights over leaving her tube in place at night, she's doing pretty well. The triplets have not once attempted to pull it out. I am so pleased with that! Noah was checking her out the very first day and I told him "No, that makes owies for Hannah" and he has since left her completely alone. He even told Nathanial "no...owies!" one day just for looking at Hannah! It is so nice to not have that worry!

Austin was home all last week with influenza A. He said he was sick on Monday, but he's been having a lot of anxiety again lately so I assumed it was that sort of sick. I left him be, but he didn't really perk right back up around 9 like he usually does. Monday night, he started sounding awful and went to bed by 6:30! Tuesday he woke up and was just miserable and I knew he couldn't go to school again. So I took him in to the doctor, figuring it was just a cold but I knew we needed an excuse slip if he was going to miss two days. And it wasn't...he tested positive for Influenza A. We've been told that they do not run the H1N1 test because it is so very expensive but that it is too early for the seasonal flu, so we can be relatively positive he had H1N1. He was immediately put on Tamaflu, as was the rest of the family so that we could avoid anyone else getting it.

On Wednesday, I took him back in because he was having a lot of trouble breathing and said it felt like someone was sitting on his chest. The doctor he saw then said to just increase his inhaler use and add Mucinex. I was a little frustrated because he didn't believe me at first when I told him he had tested positive for the flu; then he suddenly thought maybe he should be tested for the flu; then after about 10 minutes he finally understood and looked in his chart. He didn't understand my concerns about his breathing, either, but Austin has asthma, a heart condition, and a neaurological disorder...all of which put him at a much greater risk for complications from the flu. Very frustrating. He did seem a bit perkier for about an hour that afternoon. Thursday he had a few hours of perky-ness and he was back to fighting with me by Friday afternoon. He probably could have gone back on Friday, but I wasn't sure and just figured better to be safe than sorry. Today is his first full day back and he had a ton of homework over the weekend to catch up on. Thankfully, he's a strong student and in some very un-challenging classes so he won't take much to keep up.

Noah, Aidan, Hannah, and I all got colds out of the deal, but none of us came near what Austin had and I think Tamaflu helped keep it not so bad for us! Prayerfully, we will now have healthy winter season!

Hannah's Update - We're Home!

Hannah is home! I thought I would recap our events of the last few days.

On Wednesday morning, Hannah and I got up bright and early and headed for Iowa City. Daddy followed a few hours later after he got Austin and Aidan off to school and the triplets to a wonderful friend of ours who volunteered to take them (on top of her own TWO two year olds!!).
We arrived and they were waiting for us. She got into her room and we met with her doctor shortly after admission. Hannah was not happy for the first little while as we waited for all the admission stuff to get done because she was feeling very cooped up. I didn't want her crawling around on the floor, so she was trapped between being held and staying in the crib - which did not make her happy. After everything was done, about two hours later, we got a tour of the unit and then Hannah was able to go to the playroom. She stayed in there a bit (she loved having free reign over the toys and not having to fight anyone off!) and then we took a few toys back to her room to play with. Then she was happier!

Wednesday was a very l-o-n-g day of a whole lot of nothing. Hannah's social worker (who was the person who was setting up home health care and equipment) came in for a few minutes to tell us she did not have time to meet with us that day, but would come on Thursday to chat. I was a little frustrated because I wanted to be sure that she would get it all set up. The dietitian came in and spoke with us for a long time in the afternoon. She was awesome and very helpful. She did finally give us an estimate of how long the feeding tube will have to be in place - at a minimum of 3-6 months and quite possibly longer. At least I have that in my head now and I know what is going on. Then we discussed how we wanted to do the feedings. We could either do three bolus feedings per night, which would involve getting up three times during the night or we could do a continuous feed all night long, which would involve continuous monitoring while in the hospital. After discussing it with the dietitian, we felt that the continuous feed would work better for our family as Hannah is finally sleeping through the night. That meant a room transfer for Hannah to a room equipped with monitoring. So after the dietitian left, our nurse came in and we moved to a different pod in the unit. Hannah enjoyed the ride in her crib through the halls!

Wednesday evening, we finally had some "action." They had decided to wait on all testing until Thursday (but did not tell us that) and decided not to place the NG tube until Wednesday night right before her feeding was to start (and, again, did not tell us that either!). I was terrified and they told me that I didn't have to stay in the room while they did it,but I knew that I was going to be learning how to do it the next day, so I insisted on staying in. Hannah did not have a nap all day Wednesday, got up terribly early for her, and then finally fell asleep about 8:45. They were supposed to place the tube at 7, but that did not happen. Instead, they woke her up at 9:15 to do it. I was frustrated at that point, but there was very little I could do. It took her a couple of hours to settle down after that, but then she was happy again and she finally went down for the night at 11:45.

Every hour and a half after that, a nurse came in to check her blood pressure. Also happening about every 15 minutes, the alarms on her would start going off because the rhythm of her breathing or pulse would change. Between the shrieking alarms and blood pressure checks, Hannah and I did not get hardly any sleep on Wednesday night.

Hannah was a happy camper in the morning, though! Dr. V said that she would rewrite orders so that her blood pressure would NOT be taken except once in the morning, so that she could get more sleep. Then, around 11:30 am, Hannah's resident came in and told us he had good news for us...Hannah had tolerated her feed well and we were being discharged! What?!?!! I had not been taught anything, we had not seen the social worker, no testing was done, and I had only seen the NG tube placed once, for the very first time, in a high stress situation. I was very angry and spoke with our nurse and it turned out that the resident went over Dr. V's head and was discharging without her approval. Hannah had a full day of tests scheduled, plus teaching for me was scheduled and we were to meet with the social worker. We were not going anywhere.

She had her blood drawn for a myriad of tests right before lunch time. They blew the vein the first time and got it on the second time, so she had minimal screaming.

Daddy arrived and helped her enjoy her lunch and then Grandpa Kenny and Aunt Sue arrived for a visit. Unfortunately, that was cut short due to more testing, but she did love seeing them while she was able to!


We finally went to do the sweat test for Cystic Fibrosis about 1:30 Thursday afternoon. Hannah had not slept in many, many hours and was very cranky and irritable. She did not want to be messed with, all she really wanted to do was to go to sleep and cuddle; so you can imagine how the testing went. It was not pleasant at all. It didn't work the first time on the legs, but it did on her arm. Because it didn't work, it took longer than expected and we ended up not being done for a few hours. But we did get fantastic news - she does NOT have Cystic Fibrosis!!!!!

I was taught how to place the tube on Thursday evening. The nurse talked me through it early on and that part wasn't too bad. Then we decided to do it about an hour after she ate, so her food had time to settle and she didn't vomit the tube back up (which can apparently happen or so we've been told). I was terrified, so sent out an SOS for my prayer warriors to pray and I prayed hard for a bit. Then it was time and it went so smoothly I was absolutely amazed. I could feel the presence of God and I know I wasn't the one to place that tube, but God used my hands to do it. I also felt totally at peace and it went amazingly well! I got it on the second try and altogether with both tries, it still only took about 3-4 minutes.

On Wednesday night, my cousins Madeline and Gina came to visit us and break up our evening a bit...that was awesome. On Thursday night, Gina was kind enough to bring me dinner. It was fabulous to not have to eat hospital food or even leave Hannah's room for the few minutes to go get it! (I had been making mad dashes for all of my meals because I really didn't want to leave my baby!)

Hannah was so over-tired by Thursday evening (even though she did end up getting about a 30 minute nap) that she was just hyper by the time I tried to get her down. She fell asleep about 8:30 or so, but then we had to hook up all her monitors and the feeding tube, which woke her back up around 9:15. She was then UP. She did not settle back down until 12:30 am, when she finally just collapsed in exhaustion. However, she did sleep all night long and did not wake up again until the resident loudly entered the room and woke her at 8 am.

Friday morning, we were VERY ready to get out of the hospital and go home. Hannah and I both missed our boys dearly and just wanted to get back into a "normal" routine. We had some bumps in the road trying to get out the door (the social worker never did come to talk to me the entire time I was there and never even connected with our home health people until the very last minute), but we finally left about 11:30 am.
{Hannah is so happy to go home, she's even telling her baby about it!}
We arrived home in time to see the tail end of the homecoming parade and I was able to pick up Austin and Aidan. They were both thrilled to see Hannah and I! Nathanial and Ethan were also thrilled when they got up from their naps, but I got a {very} chilly reception from Noah. I asked him for a kiss and a hug and he ignored me for a long time. Then finally he said "NO!" when I asked and I knew at least he was speaking to me again! He finally did forgive me for being gone and we are now back to normal!

Hannah has pulled her tube three times - twice on purpose and once by accident. The first time I waited for the home health nurse to come to re-place it since she was on her way anyway. That way, Steve could see what I needed him to do and I didn't have to walk him through it all, either. It went very well and I placed it quickly then also. Since then, Steve and I have become quite the little team and we're near-experts in placing it. Not that I ever wanted to be, but I am so thankful for God steadying my nerves and helping me to do something that could have been a very difficult thing to do! Hannah has been sleeping a bit better since returning home. The first night was a bit rougher and last night she was closer to her more routine bedtime. Things are settling and going well!

Hannah has already gained another pound and a half - just since the tube was placed!! They told us that kind of gain will probably not continue, but it is awesome to see an immediate pick-up in weight! She is very happy and looks better than she has in a while. She will go in for weekly weight checks at her doctor here and then go in monthly to Dr. V in Iowa City.

Thank you for all of the prayers...it helped immensely and we really appreciated it!!!

Prayers for Hannah

Hannah goes in tomorrow for her NG (feeding) tube to be placed and for testing. She will be in Iowa City. We would appreciate the following prayers:

• I quickly learn how to reinsert the tube
• the testing will reveal something as a reason for being so small
• Peace for me while learning everything
• safe travels for both Steve and I
• the triplets do well while staying with a very dear friend
• Austin and Aidan do well while staying with another very dear friend
• the home health nurse will be paid for by our insurance
• Pediasure will be paid for by our insurance
• Everyone adjusts quickly to Hannah's NG tube (and leaves it be!!!!)
• Hannah grows quickly and can have it removed quickly

I am trusting God to get us through this - and I know He will. It's been a very difficult and stressful few weeks leading up to this. Our entire family greatly appreciates all prayers said on our behalf. Thank you so much for praying for us.

I will be unable to update the blog while we are there, but I will be updating my facebook and tweets (tweets are under the pictures in the right sidebar under "glimpses into life" or you can follow at twitter.com/calondercrew).

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight.

~Proverbs 3:5-6

Austin and Hannah's Party

For Austin's birthday, Steve and I took him on a "date" with just Mom and Dad - no little people allowed. He has been wanting to go to HuHot for a very long time, so that was what we decided to do on our time out. I forgot my camera (how?? I do not know!), so I don't have any pictures of that besides what is on my phone and those are just bad. You'll have to take my word for it that we had a great time and really enjoyed our time together with just the three of us!

Hannah's birthday fell on a Wednesday, so she got a little celebration with just the family. She loved her cake that I made her and had fun listening to us sing to her!

Hannah before her cake

Hannah's cake
Hannah enjoying her cake

We had Austin and Hannah's party at home and everyone had a lot of fun!

Hannah is all smiles!

OK...I'm done with the pictures now, Mom! My birthday "babies" (not so much) together

(Austin didn't want a picture alone - how typical!)

Hannah with her boys

(Noah on couch; Nathanial in red; Ethan in green)

Aidan is all honked off because he didn't get his picture taken with Austin and Hannah - the first time!

One of my favorite pictures of the whole day -

Hannah is exhausted and fell asleep on Alex!

Hannah's own cake

(yes, those are fingers already in it - thanks to Thano)

Austin's cake

Hannah's cake

Everybody pile on Emma!!!

{Poor Emma!!!!}

Hannah LOVES her new hat compliments of Uncle Kevin

She also loves her new pink tractor!

{Thanks, Grandpa Kenny and Grandma Lee!!}

Kendra and Hannah

{difficult to get two to look in the same direction!}

"I'm trying {very} hard to be a good boy, Mama!"

Austin's turn!

Everyone watching Austin

Hannah's turn

I don't know if I want to eat this cake - even for you, Grandpa Kenny!

NG Tube for Hannah

Well, Hannah didn't grow as much as we wanted her to. I took her in on Monday and she was supposed to gain a pound by that point and another one two weeks later. Before the appointment, I was looking at her and thinking her new "diet" seemed to really be working...she looked bigger to me and more filled out. I was sure she had already gained the two pounds. Then I also ran through in my head 'what happens if she's close?' No need to worry - she wasn't. She gained eight ounces, which for her is fantastic, but it is nowhere near where she needs to be to be gaining weight. She can't even maintain at that amount of gain. Upon looking through her appointments in my own notes, I was able to look at exactly what she weighed when and looking at the actual number, instead of just paying attention to the percentiles (because I already know how bad that is), was rather alarming. Way back in March, when she would have been six months old, she weighed 12 pounds exactly and that was alarming way back then. That was when they started talking to us about getting a second opinion about her weight - they started worrying around four months old. Anyway, so she was 12 pounds in March and as of Monday, she was only 14 lbs, 13 oz. That is a gain of less than three pounds. In six months...on a baby! I got it when they went through everything with me in Iowa City and I totally understood why she needed the feeding tube. But since Monday there has been a part of me that has questioned whether she really needed the tube or if maybe we were rushing things too fast. I knew it was going to happen, but I still felt like maybe I was rushing it too prematurely. Now I feel like I haven't done enough sooner and she is greatly paying the price. Now I have the reassurance that we are doing the right thing, which I needed for total peace in this situation. Numbers do not lie.

After Hannah was weighed on Monday, I "discussed" it with the nurse, who royally honked me off insisting that Hannah was "just little," (um, no - it's really a lot more than that) and she "was proportionate," (which is the EXACT problem - she quit growing!!!) and every other manner of denial. Now I am OK with this coming from people who do not understand the entire situation and I am even somewhat OK with me having been in denial for so long because I am not a medical professional who has the entire chart with letters from specialists in it. Why am I explaining this to her??? I am having a hard enough time and I felt like just breaking down right there, but I couldn't, and there I was trying to defend the medical need for an NG Tube being put in my daughter. Like I want this! Like I asked for any of this!

Finally, Dr. B came in (who is awesome, I might add) and we talked about everything and since I did know what was expected, I knew what he was going to tell me. He then made the call to Dr. V (specialist) who then called me back the next morning with her admission plan.

Hannah will be admitted to Iowa City on October 7 at 8 am. She will be on the pediatric pulmonary/cardiac floor (not real sure as to why that is). She will get the NG tube and lots and lots of testing. Testing for CF, Celiacs, and anything else that might be helpful. Then I will need to learn how to reinsert the tube. I have no idea what this process entails, but I am positive it will not be pleasant...but I will do it because I just want my baby girl to gain weight and start to grow. At this time, she will be discharged on October 9.

We have already (per Dr. V's instruction) set up a home health nurse to come in when we get home and developed a preliminary plan of treatment with them. They will come often at first, then depending on possible diagnoses, they will develop a new treatment plan. If it's as simple as this is caused by reflux, then it will be often at first until we are very comfortable and then slow down as we get more confident. She will always have a nurse available on call 24 hours a day throughout this process.

We have no idea how long the tube will stay in and any other plans at this time. Please just keep us in prayers. I am terrified of inserting the NG tube and a little nervous about how the boys (triplets) will handle things. Steve will be staying home with the boys while Hannah and I go down, so prayers for that would also be appreciated. And we'll keep updated on here as often as we are able.

Happy 14th Birthday Austin!!!

Dear Austin,

I would LOVE to write something about how much you've grown and matured this year or how very proud I am of you...because I am. But I don't want to embarrass you too much. I know that life is rough for you sometimes, but you always persevere. You are becoming an amazing young man and I am so excited that I'm your mom and I get to witness that first hand - every single day. To watch your excitement about getting your permit soon; how much you love science and gathering facts about stuff; how much you love to read; the way you care for, help out, and play with your siblings...it all makes me very proud of you. I am so very blessed to be able to call you my son and I thank God every day for giving me the opportunity to watch you grow and change. And maybe I am embarrassing you now, so I will quit, but I did want to say how very much I love you and how very proud I am of you.

Happy FOURTEENTH Birthday, Austin!!!!!

We all love you very much and you are such a joy to all of us!!

Happy First Birthday Hannah!!!!

Happy First Birthday, Hannah! We love you sooo much and you are such a blessing to us! What an amazing year this has been. You are so very special to each of us and we cannot imagine our lives without you in it!! Aidan meets Hannah for the first time - 9/16/09
Austin gets his turn to hold Hannah

Two very happy big brothers with thier baby sister

The "little boys" adore Hannah and are in love right from the start

Hannah Grace is ready to go home

Aidan and Noah are thrilled to greet their baby sister at home

Our SIX!!

Hannah Grace

One Month Old

Hannah Grace - Dedication at Two Months Old

Hannah Grace - 2 months

Hannah Grace - 3 months and quite the smiler!

Hannah - 4 months

Very curious about everything!

Hannah Grace - 5 months

Loves her baby

Hannah Grace - 6 months

Hannah Grace

7 months

Hannah Grace

8 months

Hannah Grace

9 months

Silly Girl

Hannah Grace

10 months

Growing up so fast!

Hannah Grace

11 months

You ADORE your Grandpa Kenny!!

(he's about the only person that actually gets to hold you!)

Hannah Grace

One Year Old!!!!

I am in awe that you are already a year old and in awe of the gifts that God bestows upon us in packages dressed up as "children." We are so very, very blessed and so very, very thankful to God for giving us you!! We love you, Hannah G!!!!

Hannah's Update

I know that I am way behind on blogs and I will continue to update them and let you know when I do, but I also thought that in the meantime, I'll move forward with what's going on now.

Hannah went to Iowa City yesterday for her appointment with a doctor who "specializes" in failure to thrive. Mind you, until last week, I had no idea she had actually been diagnosed as FTT. It was a term that had been used, but I was never actually verbally told that she was definitely FTT. I was a little taken aback, but it also was not a surprise by any means. So we met with a resident first, Dr. A, whom I really liked. She was with us for a while trying to rule out all the common little things that cause weight gain issues. We pretty much did rule them out. Then in came Dr. V (whom I also really liked) and she talked about other things, also, and we went through them and she ruled out a lot of things just by looking at Hannah and her past labs and chart.

First, it is not syndromic. If she had a syndrome - any syndrome - there would be some physical evidence of that and there simply is not. By physical, I mean outward appearance. She is very proportionate (which is why I wasn't concerned, but is the exact reason they are so concerned), petite-looking, normal in appearance. So it isn't syndromic.

It's not hormonal. All of her hormone levels came back well within normal ranges when Dr. B did them a while ago - when she first started showing signs of not growing/slowed growth. Turns out that was an excellent decision also because if we did those same exact tests now it would look like she does have hormonal issues because her body is so lacking. So she is not repeating tests and is going by what was tested four months ago because horomonal things don't change.

It's not social. I "appeared to be intelligent" and "willing to move forward" which are both apparently good signs that this is not our fault. She said a lot of feeding issues are social, but does not feel that Hannah's are a result of that.

She also assured us that Hannah's relatively good growth in the first four months of her life were prenatally driven. In essence, I had really good prenatal nutrition and Hannah benefited from that for the first four months.

There are other things that we are currently trying to rule out as causes. One being that she has been so ingrained from the pain of reflux, that now she is "afraid" to eat. So she is back on the Prevacid so that we can try to rule that out as a possibility. And she has gotten wise to it. She hates it and repeatedly spit it out last night, then left it in her mouth for a while before spitting it out again after I gave her a bit of food. This morning, to avoid this battle, I crushed it up and mixed it with a spoonful of oatmeal - she was none the wiser!

We are to boost her calories even more for the next four weeks in hopes that she gains 1.5-2 pounds. I couldn't imagine trying to do more but we are and she is doing OK with it. She really doesn't eat as much as I thought she was or she's getting fuller quicker because of the calorie and fat laden foods. She is now also getting a glass of milk at the end of her meals which is 8 oz whole milk plus 1/3 c powdered milk. We are also not feeding her during the night if she gets up. Surprisingly, last night she did very well with not nursing. I thought I would get more of a fight out of her. Dr. V believes that she may be "topping off" all the time instead of being really hungry and really full, so now she is on six scheduled meals per day with nothing at all after her last meal.

If she doesn't gain 1.5-2 pounds in the next month, then we go to "phase two," which is already written down as her actual course of treatment because unless there is a HUGE miracle (which we know there can be) she will not gain weight. She will have an NG tube placed in the beginning of October. I say "if," but Dr. V kept saying "when." As in, "when she's admitted, we'll do a,b, and c." Everything was "when." And I know that is more than likely the outcome we will have, but I am praying and believing for a miracle yet. If/When the NG tube is placed, she will be hospitalized (at University of Iowa) until I can learn how to take care of it and then she will go home. We were not given any estimation of how long she would have it....just that it would be in place until she got back up to 30-50th percentile range because that is where they believe (based on early growth curve) she should be.

At first, I had a very hard time accepting it...I mean, seriously, hearing your child is that ill and needs that much of an intervention is very difficult. And I was honest with Dr. V and said that the emotional side of it is VERY hard to digest, but intellectually, I know Hannah needs this and we are willing to do whatever it takes to get her to gain weight.

Right now, Hannah has "Grade 2" malnutrition; which is "moderate" malnutrition. When I saw her length slowing down and her head circumference slowing down in the percentiles, my un-medically-educated self thought that was a good thing and meant that she was supposed to be small. And noone told me differently (not that I pointed that out, because I never did - this all went on in my head). I was informed yesterday that when you stop growing in length that is the first warning sign. And I knew that from Austin - but I didn't know it was the same for babies. I don't know why I wasn't able to generalize in this situation, but I wasn't. The second, and more serious, warning size is a lag in head circumference. It means that her body has totally stopped and said "wait just one minute - when are we going to get some food going on in here??" (or something like that....I may be paraphrasing a bit!) It also can lead to learning disabilities later in life if it isn't turned around NOW. So now is the time to be aggressive.

While she is hospitalized (if), she will be tested for Cystic Fibrosis. Again, I was not a very well informed patient's mama and I hate appearing ignorant (which is why I am always researching stuff). When Noah was little he had a lot of respiratory issues from being a multiple. One pediatrician said maybe he had CF, and another one later on said no because he was tested. Soooo, I assumed that could not be the case with Hannah and did not investigate further. Turns out they only test for the major genetic forms of CF and not the minor ones. So it warrants being tested with this many issues.

Steve and I have, once again, begun our research into causes of this and another thing that sticks out as a possibility (especially the more we research it) is Celiac Disease. One of the first signs of Celiacs is FTT and cranky/clingy-ness, of which she has both. Now I know just because she has some symptoms doesn't mean she has it, but we are going to mention this to Dr. V to get her opinion the next time she sees her. We are also going to continue looking at other things (one thing Steve mentioned - which to me seems out there, but whatever - is a parasite...INteresting...)

So we now have a plan and will have an even better idea if she will need the NG tube when she goes to get weighed in a couple of weeks. We still need to figure out the root cause of it, in my opinion, but for now this has to be good enough. We'll keep leaning on God through all of this praying and believing for a miracle and doing everything we humanly can for her, but ultimately, this is all up to Him and what His will is for Hannah.

Bunk Beds!!!

We finally did it. The triplets and Aidan are now sharing one room - with bunk beds - while Austin gets his own room! It's been an interesting couple of weeks while they are adjusting to the new freedoms this involves. I'm not sure I'm ever going to sleep again, but at least they are {mostly} happy about it.

Aidan's bunk - top left (sports)

Noah - under Aidan (animals)

Ethan - top right (pirates)

Nathanial - under Ethan (musical ocean)

Ethan and Nathanial's bunk

Aidan and Noah's

Nathanial's bed

Ethan

Noah

Aidan

Aidan LOVES being on the top and being the "big boy" in the room!!

Therapy and Decisions

{I know I am way behind on blogs and will update all of that soon, I promise!}

The triplets had therapy this morning. They are still getting development and speech therapy monthly. They are to get each one for ninety minutes per month, but we have found for scheduling purposes it works much better to do all three together and do both therapists on the same day.

I knew that some of the things Julie, our developmental therapist and lead person, was going to be bringing up but today it was very in depth and detailed, so I am just a little overwhelmed with it all.

Ethan is doing fabulous, when he's alone and comfortable. He chatters and even is starting to use some 2-3 word sentences (this week's big one for all three: where aidi??) and he speaks the most clearly. He's very up to trying to say anything you want him to and usually does a great job.

Noah still jabbers on and on the most, but speaks the least understandably. He talks non-stop, but he drops the ends off words, mumbles, stutters, and has a bit of a lisp. But he does love to tell a story. He also loves to sing! He is also putting some 2-3 word sentences together. Noah does the best on names and loves saying everyone's names and uses them the most often.

Nathanial is the slowest to do it, but is still doing incredibly well. He tells me whole sentences, but you can only understand, at best, half of what is said. He also repeats any word you tell him and does a great job with that. He also has a lisp.

All three are definitely, speech-wise, getting there. They are way behind their same-age peers, but I am very happy with the progress we are seeing.

We are having some major issues still with biting, and now pinching. And the pinching is not nice...it's vicious and they leave horrible marks when they do it. Ethan and Nathanial (especially Thano) tend to do the most pinching, but Noah does his fair share also. Noah tends to hit more often when he's upset.

Lately, we've been noticing a lot of autistic-tendencies in Nathanial. I don't even really know if they are autistic tendencies, but there is something very different about Nathanial than the other two. I am convinced at this point he is either autistic or has ADD. As he gets older, it is becoming more and more obvious whereas the other two seem to be mellowing a bit with age. I brought my concerns up to Dr. B at their well baby visit this week (I'll update about that in a different post later), but he seemed to think that we could hold off for a bit and just watch him. His logic is that he is already in therapy, uses a pretty strict schedule, and not a lot would be gained by trying to get him diagnosed with something right now. At first, I was OK with that, but the more Steve and I discussed it the more we thought as long as we have people in place and resources at our disposal, why not use it? So I brought up everything he's been doing to Julie and she agrees it warrants a closer look. She also observed several of the behaviors I was describing in the short amount of time she was here. She wants to bring in the school psychologist who has observed them before again, this time at home during a therapy session, to specifically focus on Nathanial. I am relieved to know we are taking this step now because if he is autistic, then we can start more intense therapy with him immediately. She will observe him at the next visit and then recommend to us if she thinks we should take it a step further or wait.

The other thing that was brought up, which I knew was coming, was preschool. They are "almost three" and will age out of this level of therapy at three. She says at this point, she can guarantee that they are not ready to be done and will all be on an IEP. Which means we need to be making some big decisions in the next little while about what our next step should be. Julie wants them in preschool as soon as they turn three for several reasons. I do not. I did not, ideally, want them to start preschool until they were 4 1/2, but I did know that would probably not really happen. I also wanted them to go to preschool where everyone else has gone. That is now looking more and more like it will not happen at all. We can, of course, object and say no to her recommendations, but honestly, they would be better off in the preschool she is suggesting. She wants them in 4 half days per week and then move to 4-5 whole days per week at 4 1/2. The preschool she wants them in has a special education classroom with a special education teacher. The more that I am praying on this, it seems this is where they really need to be and where they could most flourish. My one problem with it has been that it is not in the same district or town that we are in. And that would mean they would go to kindergarten not knowing a single classmate. Then I realized that Aidan only knows a few of his classmates this year because most of his class went to morning preschool and he went to afternoon. I do feel better once I thought it all through from that angle.

Steve and I will have big decisions to make in the next few months for all of the boys...will you pray with us that we follow God's direction and His will makes it clear which way to go?

Wordless Wednesday

Wordless Wednesday - Best of Buds (even - especially? - in sleep)

So much to do!!!

I have been busy enjoying summer and in the last couple of weeks, my blog has been neglected. I have done several back-dated posts of our activities of late. Also please keep Nathanial in prayer. He was infection-free after the last set of new tubes for about two weeks, now is back to growing out several infections in his left ear. He also has another staph infection growing outside his ear again.

And, please also keep Stellan in your prayers. He has been in persistant SVT for days and is not doing well at all. They are currently planning to airlift him to Boston. Please remember his family in your prayers, also. This has been an amazingly difficult battle for them, as you can well imagine, and they need to be able to rest in the Great Physician's arms now.

And now, scroll down and "relive" our summer fun for a bit!

Wordless Wednesday