All New Logan

Since Logan has gotten over RSV, he has really started changing quickly. He never had any interest in toys and now he grabs them all the time. He also seems to have a lot more energy and he babbles all day long. It's so fun to watch him! He gets really excited to see people he knows and is a lot more aggressive in his bouncer and exersaucer. His therapists told us to be prepared for plateaus in his development and we were definitely on one for the last several months, but now he's off of it and moving so fast. I've been taking a lot of video and pictures of these new skills and I will be posting them soon.

A Prayer Answered

On Saturday, I posted about making the right choice and I just read another blog who just caused an expectant mother to make that right choice. Read how litte Ella Grace changed the lives of a special family who just found out there unborn daughter has Down syndrome. This story is exactly what I wished for.

Ella Grace With The Pretty Face

DS Family Network Playdate

Ruby, I love those Baby Legs! She is so adorable!



















Logan and Noah (13 yrs)














Our little ones, Logan, Aaron (5 months), Ruby (9 months-4 days older than Logan), Hendrick (3 yrs) Also pictured, Aaron's older brother, Christian and their mom, Debbie.

Logan and Aaron

Making the Right Choice

About the Down Syndrome Belongs Video in my last post:

I wish there was a way that I could make everyone aware of how wonderful kids with DS are and how much they deserve to be born so that Doctors and expectant parents can make the right decision when faced with the diagnosis of Down syndrome. It makes me sad when I think about 90+% of DS pregnacies being ended and many Doctors are actually encouraging this. I am so thankful that my doctor never encourages ending the pregnancy. That makes me feel like I chose the right doctor. He also had a very positive outlook for us when he delivered the diagnosis. He told us Logan was a blessing in disquise and that everything would be ok. He also told us how he has personally been touched by a nephew with Down syndrome. At the time, we were in shock from everything, but I look back and am very thankful that he handled the situation so perfectly. I have heard stories from other parents where their doctor's were not so encouraging.
I wish someone would have told me about children with Down syndrome before I had Logan. I wouldn't have been so devistated at first.
For now, I guess the best thing I can do is to take Logan every where with me and include him in all of the activities that typical kids participate in. We take Logan every where we go and I think he already has touch a lot of people and changed their minds about DS. They have discovered Logan is just like any other baby.

Down Syndrome Belongs

Devin's First 3 Years

This is the Montage we showed at Devin's Birthday Party.

Photo and video editing at www.OneTrueMedia.com

Logan's Nine Month Stats

Weight: 22 lbs 15.5 oz (80% Regular Chart) (Greater than 90% on DS Chart) He was at 23 lbs 10 oz before RSV.

Length: 27 inches (10% Regular Chart) (50% DS Chart)

Head: 44 cm (15% Regular Chart)

His appointment went pretty well. We discussed a sleep study, which we decided we will do if it's still an issue when he can no longer sit in his car seat to sleep at night. Then, the doctor also asked a list of questions about Logan's gross and fine motor and intellectual development. Even though I am aware of where he is at for his age, I was very disappointed because the doctor went through the whole list and I had to answer no to every question. Like, "does Logan use his thumb and index finger to pick up small objects. (he is just beginning to reach out for stuff, but rarely actually grabs them with his whole hand!!) No, No, No... Let me say, I really like Logan's doctor and I'm not going to hold this against him, because I think he felt bad afterwards. I think he realized how rediculous it was to ask me all of that. I am sure he had to (maybe hoping I would say yes to something). Unfortunately, he made reality hit me...sometimes I get in a mode where I just feel like nothing could bother me, and then WHAMM! The sad feelings hit, but they will pass. His smiles tonight made me forget.

All about Devin

To understand this post, you need to know that Devin is completely in love with all things High School. He LOVES the high school pep band and pretending to run through a poster past the cheerleaders and out onto the gym floor. He's always reinacting everything he sees as High School events...and we go to ALOT of them! (his Dad coaches several sports)

Make photo slide shows at www.OneTrueMedia.com

Life back to "normal"

I guess I can now say that life is back to our kind of normal. I think Logan is off oxygen for good now. He will have his 9 month check-up on Monday. I plan to ask about a sleep study (to check his degree of sleep apnea). Logan REALLY impressed me today...he is opening his mouth for solids and actually seems interested and hungry for them! Before now, I would have to kind of force feed them and he would rarely finish a whole serving. When he was in the hospital we stopped the solids and since then it was starting to look like it was going to take him a LONG time to get back to where we were. He also lost a pound while he was sick and I have been worried about his appetite. My milk supply got very low when he wasn't eating much. I hope that on Monday we will find out that he gained that pound back. (good thing he had some to lose)

Happy Valentine's Day!

A Valentine's Day wedding for a couple with Down syndrome.
Click here to read their story and watch their video

Logan is 9 months!

Logan is feeling much better. He has been off oxygen for 24 hours now so we are crossing our figures that he won't go back.

At nine months he is now sitting for a few minutes at a time (if he wants to). He has stopped rolling since he was sick, but hopefully he will be back at it soon, and we are seeing many more smiles as he is feeling better.

Photo and video editing at www.OneTrueMedia.com

Home care

Logan has been going on and off of oxygen since we got home. He went almost 24 hours without it, but last night and this morning he needed some help again. We went back to the doctor yesterday and were sent home with yet another machine...a much smaller one though. We now have to give him nebulizer treatments of a steroid to hopefully relax his airway and possibly get rid of that chronic cough he has had since October. I am a bit overwhelmed (that's an understatement) with Logan's regiment of treatments. The one nice thing about being in the hospital was that the nurses could give the meds and I could just call them if Logan's monitor was going off. Now, I am left to deal with it all on my own. I still worry that there are underlying problems with Logan that we are missing...but thinking about that too much is not good for any of us.

Home at last!

At the hospital this morning we saw yet another doctor and this one felt that if I was comfortable taking care of Logan at home, he would let us go. So, Logan is on oxygen 24 hours a day at home. My job will be to monitor is O2 and hopefully wean him off of it slowly. I am so glad that we didn't have to wait for him to go through the day time without it. I think that would have kept us in the hospital most of next week.
Finally, I can post some new pictures!
SO glad to be home!! Logan's smile as I was loading him into our van was priceless!

Logan cozy at home.

Still Praying, Still here

Wish I could upload pictures. I miss doing that...I am a pictureaholic.

Lung Tissue Damage

Well, after a completely horrible (O2 stats in the 60s), sleepless night, and three doctor's opinions later I think I got the answers I needed for now. His doctor has stopped the breathing treatments (that I was sure were making him worse) and the steriod shots and got an opinion from a specialist down at Children's in Milwaukee. The conclusion is that Logan has suffered lung tissue damage from the RSV. All of his RSV symptoms (except for the need for O2) have gone and now we will be here until he can make it through the daytime without O2. (That may take up to a week, but we are hoping only a couple of days) When he can do that we will go home with a monitor and O2 for at night.
This is all still very frustrating, but I feel I may see the light at the end of the tunnel.

Really Bad Timing

This morning I got a call from Children's Hospital in Milwaukee saying they could get Logan in tomorrow for his ABR hearing test!! We actually made it to the top of the cancelation list and I had to say no! Of course he couldn't go because he is sick...but for this test he has to be perfectly healthy with no fluid in his ears. Now I have to hope that his ear infection clears up fast and he gets better before they call again....if that even happens. We are scheduled for April.

This morning the doctor said Logan has to be off oxygen completely for 12 hours before we can go home. He is still on it right now. :(

Day 5: Not much improvement

Logan's oxygen was lowered yesterday, but when night came he ran a fever and couldn't stop coughing. By morning his O2 needed to be raised up again and they have started deep suctioning him every 4 hours again. He now also has an ear infection.
Again today, when he had just had all his meds and had been suctioned, he was pretty happy and he played for a couple of hours. Hopefully the suctioning will stop his cough tonight and he will get a good nights sleep.
Please pray that we are home by this weekend.

Day 4: Still on oxygen

Last night and this morning Logan's oxygen had to be turned up pretty high, but tonight, thankfully, they are starting to bring it back down. He still needs it all of the time, but he has only needed to be suctioned once today!!! What a relief! I couldn't take much more of that. Also, we both slept much better last night because his O2 alarm didn't go off at all (because they had the O2 cranked up). The doctors are currently keeping a close eye on his ears because he has had a lot of drainage out of one and even some blood has been coming out.
The good news is that Logan was awake AND happy for a few hours today in the middle of the day! He even played a little and I finally got a couple of smiles (it had been way too long). I hope that was a sign that the worst is over.
Still no talk about when we will go home.

Longer Hospital Stay

Logan is getting worse, so we will be at the hospital for atleast a couple more days. He is on oxygen all of the time now and is needing to be suctioned every few hours, and the suctioning isn't getting any easier to watch. He just seems even more miserable now and he's either sleeping or crying. I haven't gotten much sleep with his oxygen alarm going off all of the time, but tonight they plan on keeping him more comfortable with more oxygen so hopefully we will both sleep well for the first time since last Thursday!

Logan: Hospital Update

We are still here...the doctors think that Logan has not reached the peak of the RSV yet since he only started showing symptoms on Thursday night. He didn't need oxygen last night and his fever is gone, but he is really working hard to breath today. They suctioned his nose and throat by sticking a tube all the way down his throat through his nose (horrible thing to watch) and we will see if that helps him be able to eat and breath more easily. He is also more weezy today. I think they may be right about this getting worse...and I would hate to go all the way home and have to come all the way back.

Edit: We are going to be here tonight...they will evaluate him tomorrow at 8am.

Logan is in the hospital...

...for the second time. Logan had a couple of scary nights and I just couldn't watch him being so uncomfortable anymore. So I took him in this morning and he tested positive for RSV. He was having trouble breathing, had a bad cough and a temp of 104.5. We will be here, at the hospital, for atleast one night or until his oxygen levels are better. They have been dipping into the eighties off and on and this we during the day today, so they may go lower tonight, when RSV can get worse. His ped said that RSV peaks the 5th day or so and tonight will only be the 3rd night. I am just SO glad to not have to worry about him turning blue in the middle of the night. Now we have machines and nurses for that.