
Mar. 20
Night Post:
-Pretty good day today:
Therapies, speech appt at the castle again (Liam likes those appointments more and more:), gave Liam a haircut today-finally! He needed a haircut before all this happened so it was long overdue...he looks very handsome:) I will try to put another pic up tommorow so you can see it. Thankful for all the progress Liam is making, so thankful. Thankful that he is still talking, even more everyday. Same goofy, chatty, strongwilled yet sweet boy. Thankful we get to take him home in a few days-doesn't seem real! We have a lot going on once we get home as well. 3 therapy appointments a week and who knows what other doctor appts yet.
Prayer Targets:
-Big tests tomorrow for sodium and cortizol levels. Starting at 8:00 am at the castle. Please pray for comfort for Liam as they will be drawing a lot of blood...Liam does not give blood easily and veins are hard to find:( Please pray that the best 'blood draw person' does it! Please pray for the results to show that everything is COMPLETELY NORMAL!!! It will be at least 3 hours worth of appts in the AM.
-Continued prayer for the swallow therapies and the test on Friday...for him to pass with flying colors.
-Continued prayer for wisdom for us for a possible cochlear implants...clear answer.
-For wisdom for all of us to learn how to communicate well with Liam.
-Best for last: Please pray for a complete healing for his little eyes and ears. Eyes to see and Ears to hear. In Jesus name we pray, AMEN!!
Thank you for praying:)
Mar. 21
Liam update:
2 more days!!!!!!!!!! (not like we're counting!)
Today was a busy day with specialists, appointments at the castle both in the morning and afternoon, therapies, chasing a two year old around a hospital room...wow;)
Cortizol and Diabetes Insipidus appt:
Liam's sodium levels are good and stable...no more need for regular weekly blood draws (Praise the Lord). Cortizol levels are finally back to normal on his own--the results of the cortizol stress test showed that (long story short) he may still need some additional help from steriods if he were to get sick (regular sick with a flu or something like that) but otherwise he is good. He will be retested for this around 6 more months.
Here is the good part of the appointment (behavior-wise) thank you for your prayers for this:
Liam is pretty happy now when we go on appointments...easier to keep entertained and happy. He is a hard 'poke' for blood draws. They can rarely ever get blood from veins on him. So after checking both arms they finally did a finger poke to get 3 vials of blood:( Liam was not a happy camper. However, when they took his blood an hour later (a part of the stress blood test) they had called a 'Child Life lady' and explained the situation to her about Liam and wanted to see if she could help comfort him (they felt bad he was so upset the first time). She was amazing...gave tips to the nurses and the lady taking his blood, and she kept Liam entertained while they took his blood and he barely even whimpered...she gave him signals as to what was coming next and had fun toys that were appropriate for him. Very pleased and thankful. Side note: it is soooo neat that everytime we go to the 'castle' we see people that had worked with Liam while he was there...they all just have a permanant smile on their faces when they see him. Even people that saw him just a few weeks earlier. We just say (in more words or less) "Look what the Lord has done!"
Prayer Targets:
-Transition home: we have appointments almost everyday next week and a ton of phone calls to make
-Safety for all family traveling.
-Wisdom for a possible Cochlear implant surgery...we talk to the doctor on Monday to see if Liam is a good canidate for sure. There is a possiblity if he is he could have the surgery as soon as 2 to 3 weeks! We need prayer and guidance.
-Pray for everything to go smoothly with the birth of our new little guy, for the timing and everything to work out with a possible surgery for Liam (I will have to have a csection again so things will get a little tricky since I can't really lift anything for at least 6 weeks after-yikes) should be end of April sometime.
-Continued comfort and peace for Liam
-PRAYERS FOR A COMPLETE HEALING FOR OUR SWEET LITTLE MAN: EYES TO SEE EARS TO HEAR
Been doing a lot of reflecting over the last couple of days as it gets nearer for us to go home. I think of the first horrible night in the hospital in Rapid, getting airlifted to Sioux Falls and having NO idea what we were in for. Then the scary nightmare days in the PICU at Sanfords, the joyus day of being moved to the regular PEDS floor and then eventually to here at the Childrens Care Hospital for rehab. Still can't believe that our sweet little boy is blind and deaf but we have seen God work miracles already and we believe he is not done with Liam. Thankful he is alive. we have seen God move in our lives and the lives of others through all this. We have met many many many people who have loved on us, and encouraged us, supported us, and prayed for us. We are still very humbled and thankful throughout this all. Thank you all for continuing to believe with us! We love you.
Mar. 22
Liam post:
Oh man...we are actually going home tomorrow:) Another busy day of chasing after Liam, appointments, meetings, packing and therapies.
Liam's deaf/blind specialist met with us again today, she spoils Liam rotten and he loves playing with her. She brought a lady in who is going to help us learn sign language back home via skype and sometimes in person. She also has experience working with deaf/blind kiddos. We are planning on teaching Liam sign whether the implants work or not. We feel very blessed to have their help! Tomorrow, Liam has his last speech therapy at the castle at 8:00 am and then the swallow test at 9:00. We then have a 'checkout' therapy meeting around 11:00 and then we get to go home!
The next week will be very busy as well with appointments and we are going to try to keep things as quiet as possible at home for the next couple weeks. We were told by the specialist that it is very important for deaf/blind kiddos to have an established routine. We are trying to get Liam used to just Casey and I and his house and work on routines before he has many visitors...We love you all and are so appreciative of all your support through all of this. We have been so blessed with amazing friends and families (new friends included!), I just am still so amazed by the generosity that has been poured out on our family. We will never forget it and are forever thankful for all of you and your prayers.
*PS: we are packing up the room right now...oh my goodness...who knew you could collect this much stuff in 3 months.
One of the last things Liam said to me when he was sick in the hospital at Rapid, before things got really bad and he couldn't talk anymore was, "I want to go home." Still breaks my heart everytime I think of it...But THANK YOU JESUS, finally little man, we are going home!
Prayer Targets
-Please pray for Liam's swallow test tomorrow morning at 9:00am.
-Please pray for an uneventful,safe, happy 5 hour ride home. (maybe for Liam to even take a really good nap;)
-Wisdom with timing for implants (if we should do them or can do them-we find out Monday if we can), timing for my csection to work with a possible implant surgery, God's perfect timing for everything.
-Continued miracles and healing for little Liam:)
Thank you Jesus we get to go home!
Mar. 25
Night Post:
Liam's first full day back at home:) we are starting to figure things out...
yesterday notes: (sorry I was soooo exhausted yesterday I couldn't do a post)
Liam slept for the first couple of hours of the trip home...we stopped only once and then I sat in the back and played toys with him the rest of the way home and had snacks (we bought him a few new toys the night before to keep him busy on the trip since the DVD player no longer will do the trick) he did great until about the last half hour was a little grumpy but not too bad. Once at home, he was excited to play with his own toys. He wasn't exactly in the best mood yesterday afternoon but that was a lot to happen in one day. when it was time to go to bed we walked him to his room and let him feel his crib...he said "we're in my room!" Yesterday was very bittersweet for me. It was wonderful to have Liam home, we were very thankful to have him home and remember his life here. I tried not to dwell on the 'bitter' part too long...the fact nothing will be the same. Casey and I are going to focus on the good and choose to have joy (he had to remind me of that this morning but we do, we choose joy).
Today's notes:
Liam slept horrible last night...he must've caught a cold and was all congested. However we prayed for him to feel better and he really seemed to feel better once he woke up. We had a great day with Liam today, he even said "I'm home now". He ate better today, we started trying to have him drink more thin liquids (he's not used to them yet) he's loving playing with all his toys. We are working on getting him used to the living room and where everything is located. Still amazed by the words that come out of his mouth, instead of losing language he seems to be remembering more and more...he never quits talking (just like before). Which brings me to a prayer target: Pray for his hearing--whether another miracle healing or for a possible cochlear implant surgery in the near future. We don't want him to lose all of this wonderful language, because, without auditory input it eventually will. Please pray and believe with us friends!
Prayer Targets:
-Continue to pray for Liam's eyes and ears
-Please pray for Liam to adjust and for Casey and I to know how to make this happen...Please pray for us to learn all we can to help our deaf/blind little man.
-Please pray for wisdom for a possible upcoming surgery and for if we have this surgery that is goes perfectly and he can hear.
-Please pray for God's perfect timing for this new baby we will be having soon and that everything goes perfectly and we deliver another healthy little boy.
-Please pray for strength for my body emotionaly and physically, especially these next few months. I'm feeling very 'round' and tired these days;)
Thank you Jesus we are home, together, all of us:)
Mar. 25
Night Post:
Well, thank you everyone who has been praying extra hard for you because we felt God moving...we had a great day with Liam today. He seems to get better and feel more comfortable every minute we spend at home.
Some good points from the day:
-we ate every meal together at the table and it was enjoyable.
-Liam had few tantrums...the few 'moments' he did have were typical 2 year old tantrums, for example when I told him no more 'big cookies' (animal crackers) since it was close to dinner.
-We took our first walk outside around the neighborhood after dinner...a favorite pasttime and am sooo happy that he enjoyed it.
-We took some videos to put on the website I am forming for family/friends/therapists that will be working/playing with Liam...the videos show different routines we do with Liam throughout the day and how we do them and sign to him.
-We are just continually amazed how he knows what everything is! he knew his Buzz, his tool bench, his potatoe head, blocks, puzzles, etc...he even helped me clean up when he dumped his toys from a box becuase he knew that he couldn't have another one until that one was picked up (one of my old rules we worked hard on b4 and sooo happy he remembers that one too haha).
-He is starting to become familiar with the living room (been working on that so he can move around more independently) He is starting to get more brave with his mobility. We still have to hold his hands but he is trying more to take a few steps here and there on his own, and crawl on his own to find stuff.
Prayer Targets:
-I just have this strange feeling that God is not done with miracles for our Liam...whatever form they may come in. I am continuing to ask you all to pray with us for Liam to hear and see again. We serve a BIG God!
-Please pray for doors to be wide open if we are supposed to go with the cochlear implants...if so, pray that they work wonders. (close doors if we aren't supposed to do the surgery...we should find out tomorrow or Tuesday).
-Please continue to pray for comfort and happiness for Liam and for Casey and I to keep on seeing the good and focusing on what we DO have.
-Please pray for Liam's first therapy appt. tomorrow. Pray that they just love him as much as his therapists in Sioux Falls did!
-Pray for this new little baby that is will be arriving sometime next month..pray for strength for Casey and I-for patience and joy even though it's going to be hard for awhile adjusting and a lot of work. Pray for the transition to go smoothly as possible.
Here's a verse for tonight (Thanks Vally)
Matthew 11:5-6 NIV
The blind receive sight, the lame walk, those who have leprosy are cleansed, the deaf hear, the dead are raised, and the good news is proclaimed to the poor. Blessed is anyone who does not stumble on account of me."
Mar. 26
Night Post:
quick review of the day--then I need to go to bed because some little guy thinks he needs to wake up early!
Liam went to his first therapy at Childrens Care here in Rapid. The therapists there seemed great and already knew how to interact with Liam or asked a lot of questions if they were unsure...so far impressed. They seemed to really like him already and he was already making them laugh...they too were amazed how smart and perceptive he is and how well he talks (sorry, little momma braging moment...but really I am just soooooo thankful that he is!) We will be going to therapies 3 days a week until he doesn't need it anymore...
update on the implants...only talked to the doctors nurse today but it looks like we are a 'go' for at least the right ear...we will find out more about dates as soon as the get preapproval from insurance...please be praying that if this is what we are supposed to do that they implants work wonders!
Here is a funny (and slightly frusterating Liam quote of the day) to leave you with:
because Liam is still 'practicing' drinking thin liquids I only allow him to drink a sip or two at a time by just making him pause between sips not guzzle it down like he wants to. Soooo he gets very annoyed with me and says something like "don't take it from me!" or "I'm mad at you". So I sign for him to be nice (it's more of a cue not a real sign but he knows I'm 'scolding' him) and he in return says "Don't say that word"....oh boy. Mr.Liam what are we going to do with you?:)
Prayer targets:
-Pray for his little eyes and ears...Pray for God to open them and heal them. Restore what was broken.
-Pray for cochlear implant surgery to go amazing (if for some reason we shouldn't for God to either heal his ears before or slam the door shut).
-Patience for Casey and I, understanding for Liam, wisdom to help teach us all to communicate.
Thank you Jesus for being with us every step of the way. With out YOU Jesus, I would've crumbled a long time ago.


