Praising God from whom all blessings flow

Great news ... His head grew, praising God for this.

Even better, according to Dr.woods measurements (he had saw him at 6 weeks) his head on a normal growth curve. So not only is it growing but it is growing normally. He also took xray pictures of his skull and bones are not fused and everything is looking normal.

So if the head is growing, the next part of the equation to to figure why hes behind developmentally, so we arent out of the woods yet. BUT if the head is growing, IM not nearly so worried, since I expected him to be behind developmentally due to his early induction and rough start.
Im praising God for the growth!

It went from 38.9 cm (6 weeks) to 43 cm(almost 5 months). Now we calculated the centimeters into inches, since his last head measurement was done in inches at his family doctor. So it looks like in a month, its grown almost an inch from 16 to 16.8.

Not sure if the measurements at his 2 month visit were just off or if it just grew now or what. I will be taking the measurements from the specialist office into the family doc for sure and letting them know. The nurses at Gilette Childrens were great, efficient and measured twice!

It was rather interesting the way it was set up. They had separate rooms to just do height and weight, you started there, then went to the waiting room, and they didnt send you back to a doctor room til they knew he was ready to come in. The rooms were all color coded and numbered. Xray had their own subsection too. So we were able to get xrays, the appt and seeing the doctor twice all done within an hour.

He has laughed a couple of times now, not a lot but a little, so thats a praise too! And is now keeping his hands in fists only bout 50 percent of the time, where before it was around 75 %

Now for the not so good stuff, it was a different scale but still, it appears he has lost a half a pound. My little guy is long but way skinny, i can feel his hip bones and ribs etc. So this is not good at all. Though thanks to another discorvery tonite, I will be making an appt tomorrow or the end of this week. He looks like hes getting or has an umbilical hernia. I showed my husband and just said this totally is not funny. Seriously this kid cannot catch a break, not a literal one either. We dont need any more medical stuff!!!!

Other praises too though. God is so amazing, he provides above and beyond anything i expect. I had shared with a friend yesterday some of our recent struggles with finances,medical issues, life etc. I had let her know that with the decrease in income, it was a lot harder making food stretch than before. She indicated that when I dropped off the kids(she was babysitting Ezekiel and Zemirah during the appt) that she would have a couple of meal in the bag for us. Their church(her hubby is the awesome pastor in st paul) does food giveaways and meal in the bag stuff. So i thought maybe she would have 1 or 2 bags. We get there and it isnt 2 bags, it isnt 5 bags, its like 20 bags full of food. I mean our car trunk could not hold anymore. I literally cried at the provision that God had bestowed upon us. It turned out they had some food for us, other mutual came over and decided to give too, a 3rd family heard and felt impressed to give as well. What a mighty God we serve!

Here I am sitting and worrying how will i be able to provide meals for some other friends coming in this weekend and God answers with a mighty ROAR! It reminded me once again that we are to trust him and he will provide.

On top of this huge blessing, someone anounymously donated 40 dollars too. How can I doubt after that, how can i doubt that he hears my cry.

Its teaching the kids too as well. I put some gas in the van this afternoon. Ezekiel tells me "Mom,I prayed", I said "oh, what did you pray for". He responds with " I prayed for gas and we got it" . I see the wheels in his little head turning. I was so excited to tell the kids Gideon's head had grown because they all have been praying for that. What a lesson in learning to trust God for his provision, for his strength to endure when things get tough, for seeing God actively work.

All i can say is Praise God from whom all blessings flow!!
MJ

Why Im blogging right now

I really should be folding laundry, swatting flies, loading the dishwasher, washing walls, etc but right now my frustration vat is overfull. So I vacated the room that the particular offender was in.

Lets back up ... it didnt start with that one.
Oh no, they are triple tag teaming me today. First a group of offenders(3 in fact) proceeded to destroy neatly sorted piles of dirty laundry and clean winter clothes in an effort to paly hide and seek. Okay well , I probably could have overlooked the offense if they hadnt denied the crime.

Then the next tag team took their shot, their offense involved a book. Not just any book mind you, a library book that was checked on one offenders card, therefore invoking the sacred rule of "it belongs to me" Invoking the sacred rule means no other indivudual shall touch, look or even breath on said item. The other half of the tag team took offense to the invocation of the sacred rule and proceeded to mutiny for it. This mutiny involved kicking, pushing, punching and pinching, all while I was on the phone with the specialist nurse.

Oh the fun doesnt end there, mind you. In flies the most diligent of the fighters, attitude. This particular offenders attitude got him or her into triple the punishment. Sassy mouth earned another day of grounding, pretending to load the dishwasher earned another day, and the best, continued definance earned washing whatever dishes that didnt fit in the dishwasher by hand. See Im smiling now ...

I am hiding out in the living room versus the kitchen in which I should be making lunch. I have to admit typing this adventure out does help. Just for the record, they are all still alive and accounted for.

God is good ... all the time
MJ

Definite Date

Yesterday, Dr. woods office called with a definite date in an earlier timeslot. So his appt with him will be august 28th at 11 am. Prayers are definitely welcome, as we begin this journey trying to figure out whats wrong.

I can definitely see Gods hand in leading us to Dr. Wood. It just so happened that our NICU doc(the one i loved) worked with dr wood or knew of his speciality in working with extremities. So he saw Gideon in regards to his swollen foot(which is somewhat better but not normal yet). It just so happens that dr wood also works with plastic/craniofacial things. How providential now , that we have him as a doctor already for Gideon, as we are dealing with head abnomalities. Im praising God for his foresight in putting this all together.

I can see Gods hand thruout the whole time here with Gideon. I think back to his birth, when a prayer warrior from our church asked to be at the hospital praying during the induction. Never had someone ask to do that before, felt strange, but I welcomed the prayer. Looking back,it was amazing to know that God knew we needed that extra strength, extra prayer and extra support that day. So he prompted Mary to be there and Im very thankful for that.

During the week after his birth, we were shown Gods love thru so many people. From someone paying for our car repair, to an unexpected check in the mail, to personal support. I cried when one of our good friends showed up at the NICU to visit, especially knowing it had to bring memories back of losing their little one. Voicemails left on our cell phone that uplifted and encouraged me to trudge on. God was there thru it all.

While Im struggling a bit this week, as things get hard and other stresses hit our life, I just know that God is faithful. He has proven time and time again in the past and will do so in the future. He allowed some friends to help us thru some tough financial difficulties and for that I praise him. Its really hard for me not to fret bout the amount of food we have in the house, or the balance in our checking account or the upcoming months with no financial relief in sight but I have to trust that God will be at our side thruout it all. He may not dig us out of the hole we are in, but he will provide for us.


God is good ... all the time, he put this song of praise in this heart of mine.
MJ

Moving target

I have made some progress with getting the specialists to see Gidoen sooner. It seems though like a moving target, just after I put the appts on the calandar, they call back and change it to another date. Or tell me they will have to call me back after they check with so and so. Thats aggravating. So I try to call often but not every day to check on the status, with this type of stuff,you have to be diligent to get anywhere.

As it stands, he now has an appt wiht Dr. Wood sept 7, a full week later than I was told he could be seen. But i had them make the actual appt, until I can speak to the other worker today that said we could get in sooner. The developmental one isnt even on the calandar but they have been bantering around sept 25. The deal there is someone has two appt slots booked,they are hoping that patient cancels out the 25th, leaving room for Gideon. So keep praying that the spots open up quickly.

While we dont know whats wrong, its becoming more obvious that something is. He doesnt respond as the other kids have. He smiles and coos and talks when you interact with him but other times he just seems in a daze. So I have been struggling with how do I respond to acquantices that ask after the baby. People that I really dont know at all but know that we had a baby a few months ago. It feels disingenious to say hes fine when hes not. It feels ambigious to say we are dealing with health concerns. I mean, most people arent expecting me to say, well his head didnt grow in the last two months. Yet that is truth and what is consumign our thoughts these days. I tend to be fairly open in our struggles and thats likely the cause of my discomfort. I expect most people arent interested in hearing the bad;people that arent in our lives on an every day basis. On the other hand, Im not sure I can just act like nothing is wrong either.

The other thing Im noticing is that I find myself envying other babies nice round heads. Or their progress on doing things like reaching for toys or rolling over. I just want that for Gideon too.

Im choosing to remember though that God is in control. Im choosing to remember he hasnt left my side during one bit of this struggle. Im choosing to remember that he knew Gideon before he was knit in my womb. Im choosing to remember Gideons story in the bible,facing impossible odds, he triumphed with Gods power.

So Im going to keep loving my little mighty warrior and rest in Gods capable hands.

God is good ... all the time.

MJ

Stuff, things and junk

There is a lot going on in my head that I would like to write about.

I cant seem to for a couple of reasons. One is the complicated onion deal, you know as shrek says, "I have layers". So its not just a straightforward thought process. Two is I promised myself, when I started this blog that I wouldnt blog anything that I wouldnt be willing to tell my husband in person. Its not right to use it as a passive agressive tool to vent my anger. Not to mention its a public forum, so out of respect for him, I leave some things out that I could write about. Third , its an intensely personal and sensitive topic. So for right now, Ill leave the stuff, things and junk in my head :)

Last night we had the elders(and some other from church showed up) to lay hands on and pray for Gideon. It warmed my heart to see our living room full of people who care mightly about Gideon and wanted to pray for him. I know others were praying in their homes at the same time. I really feel the love of our church during times like this.

Still no definitive word on dates for either doctor, so I keep calling and leaving more messages. It turns out that the developmental specialist appt slot was double booked, so we are waiting to see if its gets canceled out or not. God can handle that too, I just call every couple of days checking on the status. Meanwhile I fall more and more in love with my little Gideon every day.

Well thats all for now folks,
MJ

God is good ... all the time.

Times when we struggle may be the hardest in which to praise God. But thats when i rest in the fact that God does not change;not yesterday, not today nor tommorrow. Jesus didnt promise us bliss and happiness. So we struggle, sometimes with things of our own design, somtimes with things regarding health or kids or things that blow in from nowhere.

What Im choosing today in the midst of the gloomy rainy weather here in minnesota, is to remember the "Son" and remember what he has done for me. And choose to praise him for this season of struggle.

Im not perfect, nor will I ever be. Days like last friday when the kids are wearing me down, when Im dealing with emotions and difficult topics, when im worried bout finances, Gideon, or insert any number of other things, will come. And its what I chooose to do with them that makes the difference, succumbing the darkness or reaching for the light. It sounds much more simple than it feels to accomplish.

God is good ... all the time
MJ

Im drowning

Its like I know how to swim but my arms and legs are weighted down and I just cant swim, no matter what I try to do.

It makes me just want to give up entirely.

I know I need to struggle against the weight of darkness but it feels impossible right now.

MJ

Psalm 146

Feels relevent to me tonite.

"I cry aloud to the Lord: I lift up my voice to the Lord for mercy. I pour out my complaint before him;before him I tell my trouble. When my spirt grows faint within me, it is you who knows my way. In the path where I walk men have hidden a snare for me. Look to my right and see;no one is concerned for me. I have no refuge, no one cares for my life. I cry to you, O lord; I say, you are my refuge, my portion in the land of the living. Listen to my cry for I am in desparate need;rescue me from those who pursue me, for they are too strong for me. Set me free from my prison, that I might praise your name. Then the righteous will gather about me because of your goodness to me.

May Gods words refresh my soul.

MJ

Nathaniel

Nathaniel came up to me and asked if our church was going to memorize any more passages. I said I wasnt sure, so he requested I pick one for him. So I start perusing the Bible and jokingly said that I should give him a verse bout circumsion.

So of course he asks what is that. So i proceed to explain that him and Katarina, who was in the room. She of course was way grossed out. Nathaniels response was absolutely classic
" There are some things in my life I just dont need to know"

So I gave him the love chaper of first Corinthinians, chapter 13. I gave him the option of starting at the beginning of chaper or verse 4. I was proud that he decided to seek this out on his own.

Tonite seems to be the night of laughter, full of one liners and a tickle fight.

God is good ... all the time, He put this song of praise in this heart.
MJ

We wait

We wait for the specialists offices to call back, we wait for Gideons head to grow, we wait for this trial to be over.

I really want this to be something we can fix, like adjusting his bones to allow his brain to grow but most of all I just want to know what im dealing with . The unknown, the uncertainely, the fear, the worry is what gets me. I can look at a diagnosis and start, mind you, start to deal with the implications. But the constant wondering what if its this, or that or the next thing. Or if I allow myself to google a potential diagnosis, its even worse.

I left messages today for two specialists:the developmental specialist my doc recommended and his foot doctor whom I also believe does head stuff too. Im hoping his foot doctor can get us in sooner, him being an already existing patient and at least then I would have something to go on. I at least want an appt on the calandar, even one 6 months out, then I feel like i can start searching around for options that might get us in sooner.

There feels like an urgency to deal with this now; like its something that we need to address quickly in terms of fixing it. Im also aware it might be just who he is, a little blessing from God and while thats not my first choice, we would deal. Again though the unknown just lurks right now.

God is still God, still unshaken, unmoved and still the same, God is good ... all the time!
MJ

Back to 11

Andrew and the two boys made it home safely last night. And I cant tell you how relieved I was to have my husband back home. Didnt miss the boys nearly as much, but its good to be all back together again. As they say, absence makes the heart grow fonder.

I was also able to share with Andrew our current struggles with Gideon and his health. That allowed me to release the heavy burden of being the one to know this knowledge. I had shared with other friends to pray, but it wasnt the same as sharing with my husband. We cried and talked and prayed.

I dont know what Gods going to do. I dont know if he will heal him completely, I dont know if he will cause his head to grow and his brain to develop properly, i dont know if he will just give us grace and stamina to weather this trial, or some other thing. I do know this, whatever way he helps us thru this crisis,it will give him the glory and I praise him in the midst of the trial.

It is hard now though. Its starting to feel like a year of trials. Last year felt like the year of blessing and I dont know if thats how God works. But with the troubles in the pregnancy, Gideons really rough birth, his hospital stays, my diagnosis of lupus and now more health struggles for our little man, it just feels like a year of trial. I really have found myself resting in the fact that God doesnt change, not yesterday, not today nor tommorrow. And that ever constant presence is what gets me thru times like this. I know that no matter what chaos, or struggles or trials go on down here;God is not shaken nor thrown off his throne...ever.

Yesterday all of it felt unsurmountable but today I feel like I can cope with Gods help. I think it really helps having my husband back home and being able to face this together. Does this mean i wont struggle with it all again? Nope its going to be a day by day thing , even hour by hour at times.

Yet I want to praise God for his goodness, for his grace, for the blessings he has given me

God is good ... all the time. He put this song of praise in this heart of mine.

MJ

So much

there is so much floating thru my head today that I want to blog bout, but I cant quite grasp it and form it into words.

Wendy, Ill get to the meme eventually here though, thanks for tagging me! Glad you are blogging again

MJ

Gideons 4 month check up

His weight was okay, he was 15 pounds, which is 75 percentile, so hes just long and lean. He is really skinny though. His height came in at 92 percentile, so thats likely part of the weight deal.

But his head circumfrence didnt grow at all, from 2 months ago. They measured it twice today. Its currently at 16. So either it was measured wrong last time, or its not growing. Which is extremely concenring to me. He still has his soft spot open, so thats good. Right now the doc is just watching that, if it doesnt grow in a month, we will have to do some brain and bone scans to see if there is a specific cause.

Gideon is also not hitting enough developmental milestones at this point. Hes low on muscle control in the back, head and neck, hes not looking at his hands or trying to put them together, nor laughing. In fact, he still keeps his hands in fists 75 percent of the time. He has started chewing on his fist , so taking it up to his mouth. Hes scooting off the blanket but not rolling over. And he cant sit in a prone position with assistence. He still tips over in the swing, if i put him there.

The doctor gave me the option of waiting two more months or getting him assessed now, to see if there is anything to do to help him along. So i opted to go now, she is researching our best option in specilists, so the appt should be in the next month or so.

Im most worried bout the head growth, the developmental stuff, i expected to be at least a month behind, with his rough start. Please pray for Gideon, that if something is wrong, we find it and get him the help he needs. That he continues to grow, especially his head and develop at a good pace and for me, this is a tough week to get this news. I cannot reach andrew at all, so Im stuck waiting til he comes out of the wilderness. PRay for peace as well, I feel like i can handle health and medical stuff happening to me, but its a lot lot harder when its my baby.
God is good ... all the time~

MJ

I even miss the video game sounds

Hubby and two of our boys are up in the boundary waters this week. They left early this morning at 1 am. As I sit here in the evening, missing my husbands prescence;I realized I even miss his video game sounds.

He plays an video game fairly often in the evening, for his down time. Somtimes the boys get in on the action, and they go play online quests. Strange, the things we miss somtimes.

The rest of the kids are watching a movie downstairs, Im about to open a new book from the libary and Gideon is resting. I really should be cleaning up this disaster zone but tommorrow is a new day!

MJ

Perspective

There was a huge bridge collapse in my state today. At least 7 people are dead, numerous more critically injured, several unaccounted for. It puts my fighting with my husband today in perspective. Suddenly the things I so stubbornly held to today, dont seem as important.

A shift had occured, suddenly I was thankful my husband was sitting on the couch here at home with me. He doesnt drive on that bridge often but had an errand or traffic reroute sent him that way?

It reminds you that we are not promised tommorrows, only todays.

God is good ... all the time

MJ

Sad

I just feel sad today.

MJ