Appointments galore

It feels like we constantly running to this doc or that one. Right now he has 6 different doctors. Tommorrow we see the orthopedic doctor to determine what is going on with his hip. His primary doctor indentified a loose clicking hip at his 6 month appt, so this is the follow up to that. He will likely need a brace or possibly surgury, we should know more tommorow.

Then friday, he will meet with the birth to 3 program coordinator to start his assessment. Its a program thru the school district that provides services like speech, occupation and physical therapy for kids up to age 3.

Gideon also has his appt with the geneticist scheduled for next tuesday. So we should get some sort of answers as to what is going on there. Right now they are considering klippel-trenaunary syndrome, but nothing is definite yet. But that is a congetital malformation disease, somthing in how he developed in the womb. Time will tell on that one though.

And since his umblical hernia is getting larger, we now have an appt to see the surgeon to determine if we need to do surgery on his hernias sooner than later. That will be later this month.

I had him yesterday for another weight check and he is up another 4 oz! So while not as great as last week, still a definitive gain, woohoo!!! He is doing fabulous though, taken to solids really well. He now eats solids 3 times a day without a fuss. Most of the times a whole jar mixed with oatmeal cereal, to bulk him up. He loves his vanilla yoguart as well. He also is beginning to play to grab at toys,mostly to chew on but hey thats progress!

Thats all for now folks, God is good . . . all the time!
MJ

Weekend musings

My laundry fairy is coming tonite!!! I am pretty excited, they were last here this summer, so its been a few months. Gideon is so much more interactive now, so I am excited for her to see that as well. Not to mention the laundry is piled up and definitely could use a laundry fairy!!!!

But this means I must get moving and get the house in order for weekend company.

Andrew has to do some off site testing this weekend, so he will end up working late tonite and saturday morning. It will be nice though to have company to hang out with while hes gone.

The xrays for josiahs ankle came back negative, so no break, just a severe sprain. Hes still in a good bit of pain though. He will be on crutches for 2 weeks minimum, then we will reevaluate.

On an up note, Gideon is up 10 ounces!!!! I had him weighed on wednesday, so not even a full week and he was up that much. He is now 15 lbs 10 oz, we will hit that 16 lb mark soon! He really has taken a liking to solids. All of a sudden its like something clicked in his brain and he has started opening his month and eating entire jars full. I have been mixing whatever i give him, yoguart, veggies etc with cereal, so it adds some extra calories in there. So hes eating solids 3 times a day and nursing and given his weight gain, it seems to be working.,

He cooperated for part of the tests they wanted to do. The swallow study was fine, he is swalloing perfectly with no aspiration. But because he refused every type of bottles he was offered, they could not do the upper GI. They wanted to check to make sure he wasnt aspirating afterwards when his stomach is full. Since he is gaining weight currently, t hey arent going to push to do that test currently. His othopedic consult is november 1st and the clinic is still working on scheduling the geneticist. He is a happy little boy and loves his mommy!

God has been providing left and right from a good friend bringing over a meal to people dropping by with miscallneous groceries. Some friends found a bag of bread someone dropped on the side of the road, someone else dropped by some ham, someone bought over a delicious casserole and someone else came by with groceries. I am amazed and very thankful at how people have shown the love of Christ in a very practical way. It makes me feel very loved!

God is good ... all the time!
MJ

Woohoo

I just found out that andrews proposed work schedule change was approved. He now will be working from 730 to 4 most days. He will still need to cover somedays til 5 as people are sick or on vacation but this is huge! It puts him home then with commute at around 5 or so. I am really excited. Its been rough going with the later schedule he has been working. When he stays til 5, he often isnt home til 630 pm

It puts everything later in the evening and we dont get to spend as much time with him. So this is a definite praise.

On another note, not so good one, Josiah has likely fractured his growth plate in his ankle. He was coming down the outside stairs and tripped over a rock and bent his foot completely back under him. I took him in to the clinic right away. Thankfully, he had the prescence of mind to get injured before 5 pm (lol!). Anyway because of where he broke it, it doesnt show up well on xray. The doc thinks though based on how tender that area is and a small spot on the xray,that it is indeed broken. So she sent the xrays off to the hospital to be reviewed by the radiologist and splinted him for now. If they come back and say broken, we cast it, if not we keep it splinted and treat him for a severe sprain. We likely will have to go to an orthopedic doctor given the place he broke it. The kids found andrews old crutches in the garage and the nurse helped fit them to josiah. So he is off to school today, not sure how thats going to go.

Gideon video swallow study is this morning at 1115 am. So hopefully that will either clue us in or rule something out!

God is good ... all the time
MJ

Song of praise

What comes to mind this morning is a line from my favorite song "God is good, all the time, he puts this song of praise in this heart of mine"

When I think about Gideon and the strides he has made over the last 6 months,I can only praise God for his goodness. Everyday I see Gideon doing somthing new or working on developing a skill he already has. It makes me just sit back in awe of how awesome our God is.

He has started grasping at things with his hands. His arms and movments are still a bit arkward but when he reaches out with both hands and touches my face, I just melt. He now brings his exersaucer toys to his mouth to chew on them. His hands are mostly open with just the thumb tucked in now. Its all little things, things that I likely took for granted before.

I have been thinking of a woman i met a few years ago. As I would wait for one of my kids who had occupational or speech therapy, I got to know the other moms waiting during the same time slot. This woman had at least two, maybe more, severely developmentally disabled kids. I distinctly remember one discussion where I talked bout being excited for whatever milestone the baby at the time had done. She responded with telling me how excited she was when her kids met those milestones, months or often years later than expected. I thought i understand what she was saying. I realize now though, I really didnt have a clue what she truly meant. I understood on the surface, yes, but not until you have been there, do you fully comprehend it. Gideon is only delayed by 2 or 3 months, not years and he is fast developing many skills. But that gives me a glimpse into what its like for this woman. I am much more excited when he grasps for that toy than I was for the other kids. Its not that hes better, or anything like that, its just that I recognize the struggle it took him to get there. It makes that prize, that skill, so much more celebrated having worked a bit harder for it.

I also finally discovered something he likes to eat(besides momma milk that is). Vanilla yoguart is a huge hit, he even willingly opens his mouth for that. Im extremely thankful for one food that isnt a battle to feed him. Allow I suspect he is completely playing me. I tried yesterday to feed him some cereal and he wouldnt open his mouth and turned his head away. I switched to yoguart and once he realized what it was , he began opening his mouth. Little stinker!

God is indeed good .... all the time!
MJ

Lots of posts

I have several drafts started, as I want to share the good news from Josiahs race and school conferences last night. I think though, this is what most of you are waiting for, the test results!!

First of all -- The brain mri was normal!!! Praise God for that, it showed no tumors, damage, scars or anything, all looked completely normal.

Now that being said, there could still be an issue going on, like cerebal palsy , that wont be able to be diagnosed until he shows more motor control. you can still have cerebal palsy with a normal brain scan. But im praising God for a normal looking brain!!!!!

His leg/foot mri didnt come out so well -- not only is it showing a venous malformation , it showed that the bad leg/foot has overgrowth of bone. They are sending us to a genetic specialist associated with the university of minnesota. It isnt something that requires immediate attention,but it will require more follow up.

His thyroid test came back normal and his chromosomal test will take up to 2 months for results. So more waiting on that. But as far as the specialist knows, she doesnt know of a specific gene that would cause the overgrowth syndrome. It is just one more piece of a puzzle that we put in place, to rule out things.

PRaising God for my sweet little Gideon!!! God is good ... all the time!

MJ

A Praise

Andrew had a sleep study done last evening. He has severe sleep apnea, since hes lost a significant amount of weight over the last few years, his doctor wanted it rechecked. With his first sleep study, it was obvious in the first hour, that he had severe sleep apnea, there wasnt a question in the docs mind. Today, he is dramatically improved. While its not completely gone, it has gone down to only like 7 severe apnea an hour, with the slight apneas included, only 28 an hour. It was more than once a minute, the last time he had it done, so this is a huge improvement. Praising God for this! Im continueing to pray for complete healing, knowing his desire to get off the sleep machine for good.

As of now, they will need to recalibrate it so he had a lower pressure, he doesnt need it as strong now.

Well duty calls, Gideon needs attention, breakfast on the stove and housework to start. I think the laundry has started chanting ... "Dont wash me, Dont wash me". You might wonder why it chants that, but I know of its secret plans to mutiny once its forces become strong enough. I must battle it today and significantly reduce its numbers.

God is good... all the time!

MJ

Beautiful Day

Its a really nice sunny fall day today. I would totally love to go hiking with the whole family. We did that a lot, when we lived in st paul, usually at one of the state parks. You can get a state park pass which gets you into all of the parks for relatively cheap.

Alas though with Gideon having Pneumonia, we are supposed to keep him in and close to home. He doesnt act very sick other than just sounding congested a little and coughing infrequently. So its hard sometimes to remember, oh yeah... cant go anywhere right now. I know its for his own good, so his little bit of pneumonia doesnt develop into full fledged fighting to breathe pneumonia. I still would have loved to go hiking. I have a million things to do here like about a million pieces of clothes to wash and fold;I think Im taking a bath instead,

MJ

Friday thoughts

After reading Andrew's recent posts, it got me to thinking bout what I wanted to write about today. Knowing that my pastor (Hi Tom!) and other church people read the blog, it makes me think, hmm should I write about that? Well Im going to anyway, cause this is one of the places where I can somewhat publicly thank God for his provisions and what he does for me. That is my intent today, and part of it comes with the territory. Its also where I am at currently and that doesnt change no matter who is reading.

I went to the food shelf today. I have done this before in years past and have generally saw it as a way of God providing for us. That I am very thankful for. I havent ever went here though, so it was unnerving and full of anxiety for me. Not knowing where it was located, how it worked exactly, and just the complete unknown. To make it a bit more challenging, the address that I had, was an old address. So at first I went to the wrong location, the courthouse. I have to admit, that was the hardest part of the day I think, going in wiht the 3 little ones and asking if anyone knew where the food shelf was located. But God was with me, he gave me the strength to do that.

Once there, the workers couldnt have been nicer. All 3 were older and very nice. The one, andrew had talked to on the phone remembered our situation and was able to identify with us. You see, she had 10 kids, so she was very encouraging to me. She talked of remembering how it was for their family. God is indeed good, he knew that I would be nervous and that I needed that extra boost of encouragment. So Im thankful for that.

God provided mightly once again! This time thru a food shelf and for that Im enternally grateful. God is good ... all the time! He provided a lot! Vegetables, canned fruits, soups, even some cookies. Praising God for his provision, once again!

God is good ... all the time!
MJ

The fun never ends

The MRI went well, I could definitely feel all of the prayers. The worst part was the waiting for them to start with a hungry fussy baby boy. He really was a champ though, not a lot of screaming as long as i walked the hall with him. They took him back around 1015 am and came and got me around 120 pm.

It was a long time, but that time was a bit easier as I lost myself in a book I was reading or some tv program that was on. They didnt get started on the actual MRI's until closer to 11;the blood draw didnt go so well. Eventually they got the bloodwork needed and proceeded the imaging.

What I found most interesting is that the estimated time for a brain scan is only 30 minutes while an extremity(arm,leg, foot or hand) takes an estimated hour and 15 min. So the leg and foot scan took the bulk of the time. Towards the end, they decided to use contrast dye and they did image both feet and legs to compare the abnormal with the normal one.

When I got back to him, he was definitely hungry! He nursed well and then fell asleep. Woke up just as we left , enough to puke all over my shirt. Thanks for praying, I really appreciate that.

I was somewhat surprised though to get a call from his family practice doc tonite. That chest xray that we thought clear --- not so, when the hospital read it, they saw subtle signs of pneumonia. Doc said with his other symptoms , she was going to go ahead and treat him. I am never more thankful that God was with me today. That pneumonia could have caused complications with the anethesia! But God was watching out for our little mighty warrior.

So hes doing well tonite, a bit out of sorts, but eating nomrally.

God is good ... all the time!
MJ

Gideons 6 month check up

First of all the good, He gained 4 ounces! Praise God for that! He is finally back up to 15 lbs even~ wooohoo. So the doc was pleased with that and didnt suggest supplmenting or anything which i was positive she was going to make me. She did say that we could go ahead and start veggies and see how he does with that.

He also has gained an inch and half in length, so hes 97 percent for height but only 10 percent for weight. But he is holding his curve albeit a much lower curve but holding steady finally.

Now for the not so good news, she could hear his heart murmur again today. And his hip is loose and clicking, which likely means he will have to wear a brace to keep it in place. So they are setting up an appt with the orthopedic guy.

They also did a chest xray to check his congestion, it looked clear from my docs eyes but shes sending it off just to be sure, since he will have to be sedated on thurs for his brain mri.

I asked bout cystic fibrosis and its not one of the things they test for in newborns here. She didnt think it matched closely enough to test right away but said we will keep it in the back of our minds. She didnt seem to mind me looking up infromation on things, she just said to come ot her with any questions on it, so that was nice as well.

Poor little guy had to have a chest xray and his 6 month shots as well. I am thankful though for a doctor who takes the time to be cautious and thorough, so praising God for that too.

MJ

Google is not a moms best friend

I think most of us have done it, searched thru google for something or another. Usually scaring ourselves in the process. Yet we continue to do it. Hmmm ....

This morning I decided to look up the symptoms of asthma in babies. I have noticed increasingly more Gideon is sounding raspy or wheezy at times. Not constantly but consistently. Since I dont know much bout asthma other than my cousin and my friend Tina had it, I figured I would look up symptoms. REally diddnt know how it would present in a baby versus a kid either. Well in that search, it lead me to a link to cystic fibrosis. Which also has that wheezing as a symptom as well as digestive issues. What sort of stopped me in my tracks, was reading that often the first sign of it in infants is weight loss despite a good appetite.

Im trying not to get myself up in arms over this, after all , Im definitvely not a doctor. Its easy to start playing one on the internet, though. In some ways I just wish the doctors would say, hey Im looking at cerebal palsy or cystic fibrosis or I just really dont knwo what we are looking for. Then it gives me a starting point, I suppose its the not knowing that really gets to me.

I will love my son no matter what,my little mighty warrior. I cant wait to see what God has in store for our little man. I can see the hand of God on him. Last night, I took him with to the womens night at church. He is my little tagalong. Near the end, one of the women suggested laying hands on him and praying for him. What a powerful thing, having 20+ women laying hands and praying over my little boy and me.

His brain MRI (as well as the mri of his foot) is scheduled for thursday october 11 at 10 am. We need to be there at 9, which means leaving here at 8. What Im most not looking forward to, is the fact I wont be able to nurse after 6 am. He is just not going to be happy bout not getting to eat. Gideon already doesnt like his carseat and long drives much, this wont help that matter. I got some more details on the appt though, so now I know what to expect. The test itself will be at least two hours, then we will need to wait until he wakes up and eats something, before we can go home. I imagine it will be a really long day!

He also has his 6 month checkup on tuesday. So i plan to talk to the doc bout his raspy breathing then. Im praying big time he will have gained some weight by then.

Thats all for now,
God is good ... all the time
MJ

Counting to 3

Didnt get a lot of sleep last night, the kids took turns waking me up. Zemirah started out the night, her room door got shut(which she cant open yet) and she woke up scared and screaming. So i had her crawl into bed with me and we fell asleeep together until andrew prodded me to put her back in her bed.

Nathaniel was next up on the list, presumably woken up by the storm. He came in my room turned on the light and was rather incoherent. I tried to figure out whats up but he stumbled back to bed before I really could do so.

Then Gideon was up a lot for the rest of the night. Not sure what was up, he was restless and sorta wanted to nurse but not really. So it was a lot of broken sleep, 20 min here or there. i tried putting him back in his cradle several times, but that didnt last long at all.

No wonder Im exhausted this morning and can barely keep my eyes open. Of course Gideon is asleep now that I have to be up with the other kids ... sigh.

Lots of laundry and dishes to do today and just overall cleaning and clutter. The house needs some serious attention. Hoping I can get enough motivation and enough non Gideon holding time to tackle at least some of it.

Thats all for now folks!
MJ

Just tired

Almost all day, I have just been tired. I got up early with andrew and did go back to bed for some extra sleep but it didnt help. This morning I really had a hard time moving and was pretty exhausted. The little ones are like "mom we havent had cereal yet" ... oh yeah better get hopping to that.

This afternoon has been similar in that I just cant get a jump on things or my energy leval. Thankfully i planned a menu for the 2 weeks so I know what we are having for supper. its just finding the energy to cook it!

MJ

Back to your regularly scheduled programming

Yesterday was a rough day.

Today I feel much better. Not sure exactly what changed, other than actually getting some sleep and knowing that people are praying for me.

I did talk with a friend last night as well. She suggested I might be grieving. Im not really sure bout that but I guess its possible. Gideons birth and subsequent problems have been a constant strain. I feel like I missed his birth experience in some ways. I generally look forward to a day or two in the hospital with meals brought to me, time with the baby and vistors. I was released hours after he was born so I could go to hospital he was transferred to. I really missed the week at home, that I usually get with hubby and just the little kids.

Lately too I have felt like retreating inward a bit. Been somewhat reflective lately too, and trying to make a concerted effort to spend more time with the kids.

Im looking forward to a visit with an older lady from our church today. Since my mom has been gone many years, and my mil too(I loved her dearly), I look for opportunities to learn from the older generation. I have longed for an older woman to mentor me like it refers to in the Bible. I have sought this out many times in the past and most women are too busy or not willing do this type of this. So Im hoping this will develop into a relationship in which I might learn from.

God is good ... all the time

Ever feel like

Not answering the phone? Well I did, really didnt feel like talking to anyone, so I just didnt answer the phone. I figure ,thats part of the reason I have a machine, so that Im not a slave to the phone. Also figured if it was an emergency, I could pick up or call the person back.

Guess I just felt like retreating inward a bit today.

MJ

Deep water

The pool just keeps getting deeper and deeper and I sink lower and lower with the weight. I just want to give up, it doesnt feel worth fighting anymore. I just cant do it anymore.

MJ