Photo Update

The Long Awaited Photo Update of the Bond Family (mainly the boys anyways)

I don't even know where to start with updates on Asher, but I'll give it a good try. Our appointments have gone down to every 3-6 months with the docs and still 3 times a week with the therapists. Things are going well...he is completely off of the feeding pump and is taking all of his liquids by mouth with thickener added to keep him from aspirating. We just got the results from some heart tests and everything is looking GREAT! The "kink" in his aorta is opening up as he grows and he has a fully functioning heart. More to come on his Urinary tract as those tests are scheduled for mid Feb...but we are believing for a good report.

Joel is awesome....he's such a boy!! Balls, Garbage Trucks, Chalk, Sports....just some of his favorite things. He loves riding his "Concrete Mixer" (bike) around the house like a crazy! But, at the same time, he is so gentle and loving to Asher. He comes into the room some times and Asher just starts grinning and laughing at the sight of him. They love each other so very much and that touches my heart.

Ok...here are the pics ;)

Christmas morning - Joel opening his toy Garbage Truck!!! (yup...that's Asher under the couch ;)


Joel's special "garbage man wave"...lovingly given to his precious garbage truck. This is our ritual every Tuesday morning......wake up and stand in the drive way to wave at the 3 trucks that come by.


Our friend Anna gave Joely a Fohawk over New Years.


His first time experiencing ice outside. It wasn't much, but it did the trick!


This is what Joel calls "Riding Machines". Don't really know where that one came from...


Asher getting a diper change in a very cold car....but it didn't phase his Joy!!


During a therapy session at Arnold Palmer Rehab


He's getting so nice and plump compared to when he first came home. I love squeezing those cheeks ;)


Thinking about trying to pull himself up.


The first time Ash pulled himself up in his crib.....
he could finally get a good look at the glowing music maker!


This is how I woke up this morning...with Ash giggling and cooing, all proud of himself for getting up on his own.


Vocalizing a bit...


And just being overall cute ;)


My handsome men cooking breakfast!

So, that is a window in the life of the boys. We'll update some more on us soon. Blessings!
~Erika~

Long break between posts....broken computer ;(

Well, I had a free moment and was able to borrow Matt's computer while I pumped so here is a very brief update just to keep you all informed ;)

Asher is growing and growing and growing....I almost don't believe the pictures of him from his stay in the hospital. It feels like a movie I watched once. I'll try and post some soon so you can see what I mean. We have been released from his Ear, Nose and Throat doc which leaves us like 9 more to go, but it is progress. He is wonderfully healthy and growing right on schedule, although he does seem a bit slow on some of his physical milestones, such as sitting and bearing weight on his legs. His ped recommended having a physical therapy evaluation done to make sure he isn't falling behind so that is scheduled for September 15th. His next swallow study is scheduled for October 20th, although I'm hoping it can get moved up some. We are going to try him on purees next week with his therapist to get him use to taking the spoon and hopefully he will do better during the study. We have been having some trying times regarding my milk production. I simply don't have enough for his needs, and produce maybe half of what he needs in a day. My heart is to have his solely breast fed because I believe it is the best for his immune system and general health and well being, but when the milk runs out you have to feed your baby with something. I hated it, but I tried formula and he threw it up. I tried goats milk and he threw it up, so maybe this is God's way of saying your baby needs to be breast fed and I will provide the milk. We have had many donations from the wonderful mom's who are part of the Bosom Buddies support group out at Heart 2 Heart in Sanford. I really don't know what we would have done without them and their generous donations. My heart is so moved each and every time there is milk in my freezer to feed Asher. I can feel God's provision and love and am learning to be thankful for the "daily bread" and not worry about what looks to be tomorrow's lack.

Joel is beautiful and growing tall. He has quite a vocabulary and is VERY independent. He is becoming a protective big brother and defends Asher's toys as if they were his own when his cousin comes over to play. We are teaching him how to share and today he broke his cookie into smaller pieces and handed them to each person in the house. It was wonderful watching the fruits of our labors!

Matt has been busy with the house of prayer, doing his regular morning hours, playing on 4 sets a week and teaching on Intercession, when the opportunity arises. He carries the message in him and I love hearing about it when he gets the opportunity to pour it out.

Well, that is all for now, Joel woke up and needs momma....

Blessings!

Erika

Playing Blog Catch up ;)

ASHER:
Alright, we underwent the long test to see how efficiently Asher's kidney's are functioning and emptying and they are doing GREAT! The Ureter connecting his left kidney to the bladder is still HUGE but the urologist is willing to wait and see if things even out as he grows. Thank God we aren't having to go the route were he has to pee from his hip....that was just too weird!!! As long as he doesn't start developing urinary track infections or the dilation gets worse then we are just going to let it be for now. I have started taking Cranactin, a cranberry supplement to help urinary track infections, in the hopes it will be passed on to Asher through the breast milk. The cranberry extract makes it so that any bacteria present won't be able to adhere to the walls of the urinary track. I've also upped my supplement program to include Elderberry extract and Olive leaf, immune boosters and Anti-viral agents to help me and Asher get over our chest colds. I feel like half of my breakfast is pills ;p, but it is helping. My chest is beginning to clear and that is usually a stronghold in my body.

I think I'm going to post a few pics of the boys from the past weeks, just to photoblog you up to date ;)

Asher just after rolling over for the first time!!

Asher's first time in the exer-saucer. He got tired really fast but this is so good for getting him to use and exercise his legs. He doesn't put much weight on them yet.

Matt showing Joel how to drum in our GHOP (Garage House of Prayer). Joel LOVES the drums

Joel in his "ball pit" with the "stinky blanky"... we are hoping the blanky phase is coming to an end soon.

Joel standing in Matt's djembe case. He's soo cute !! ;)

Blessings!
Erika ;)

Asher Update.....sorry it took me so long!

Asher found his feeding tube...

I can't believe it has just been 2 weeks since I posted last!!! Life is just moving too fast now a days. Quick update on Asher. We have been following up with his kidney doctor to find out what exactly is causing the swelling in his kidney's and haven't really gotten any real answers. We had our first visit with the urologist on Tuesday and he gave a good description of what he saw going on and some solutions. We are waiting to get a long test done next Tuesday to get a definitive answer as to the cause of the swelling and from there we will find out if he is going to surgery to fix it or not. From what it looks like, the ureter, which connects the kidney to the bladder, is restricted some how and that is causing back pressure which is dilating the ureter and could eventually damage the kidney. We have some solutions that are being tossed around....one of which being to temporarily detach the ureter from his bladder and route it outside his body for a time. This will eliminate the resistance and allow the dilation to go down, hopefully returning the ureter to it's normal size. After that happens, Asher would undergo surgery to reconnect the ureter to the bladder. We will know more after the test. Pray for healing in Asher's kidney's and ureters!!!

We are also having a bit of difficulty with feeding Asher. Since my breastmilk production is only about half of what it needs to be, I was supplimenting with stored breastmilk from my deep freezer, which has since rut out. I am looking to begin making formula for Asher as I personally know of two children who have used this and they are perfectly strong and healthy boys. The recipe calls for a number of suppliments which need to be ordered and that takes time. So, in the mean time I had to suppliment with something and purchased some organic formula. Well, his little body did not like the powdered forumula at all and he began throwing up.....or trying to throw up since his nissen doesn't allow him to do so. We freaked out, not knowing what was wrong with him, and took him to the ER where he then proceeded to act like normal and made us feel really silly for taking up an observation room. I'm not usually that jumpy but with Asher's condition, you can't be too safe. So, from my perspective, anything that makes my child try to throw up that violently isn't good for him to be eating. So, we put the word out to all of our friends with new babies asking for any spare milk they had....and we have received a nice little bit...probably enough for a week or so of supplimentation. HUGE BLESSING!!!! While we have that to help feed him, I'm trying to see if he is sensitive to goat's milk and if he isn't, then I'm going to order the ingredients needed to make the formula and see if he can take that. I know I can't always count on wonderful mommy's to donate their milk and I need to find another solution pretty soon. My primary hope is that he would be able to nurse soon and could bring my milk back up that way. I have a suspicion though that my milk supply is dwindling because my body is just plain worn out. I'm over tired, over stressed and don't eat well as of late due to the before mentioned things. Put all that together and I don't see much milk being made.

Now, there are some bright points in this seemingly cloudy day. I just called the neurologist today to ask about Asher's EEG results of 3 weeks ago (hated having to wait that long for an answer) and it came back clear of seizure activity. So, we are beginning to ween him off of the phenobarbitol. It will take us 5-6 weeks to ween him off and then another 2 weeks for it to be completely out of his system so that's another 2 months and then hopefully he will be free. The urologist wants me to take him off of the amoxacillin (antibiotic), THANK GOD!!! I have been pushing for the to take him off of that stuff for over 2 months now. Apparently the urologist is the only doctor who sees the cause and effect relationship between using routine antibiotics and encountering super infections from antibiotic resistant bacteria. He said that if Asher is to get an infection, he would rather it is from a bacteria that they can treat with antibiotics. So, with that med gone he is just on the Phenobarbitol (which is being weened) and the Calcitriol, a Vit D suppliment used to regulate his calcium. Thank God he is coming off the meds!!!!

We are still seeing an occupational therapist for his pinky finger. It is starting to straighten out a little bit more which is good. I need to remember to put his splint on more than I do. He is also seeing a speech therapist who is working with his oral motor skills to help him eat better. Right now he is taking 1 ounce by mouth 1-3 times a day, depending on my hectic schedule (can you believe I had to take him to 5 different appointments last week alone!!!) He loves his bottles and I can't wait for him to get his full feeds that way.

Well...it is so late and I need to get some sleep. Sorry again for the delay in updates but I was overwhelmed with life's happenings and didn't want to write about them ;)

Blessings!
~Erika~

Aside from all of that, he is doing very well. Growing and rolling over. ...playing with toys and vocalizing. He is finally growing some hair, it's just blond and doesnt show up too well ;)

FINALLY .....THE NEWS WE HAVE BEEN WAITING FOR!!!

Today was a busy day... waking up early to shower and get a few minutes in the word before waking the family, then dropping Joel at "Momma Glenna's", Matt at OHOP and then off to Asher's appointments. All before 9 am this morning. First we saw his speech therapist who encouraged me to resume the small trial oral feeds with Asher....she didn't hear any aspiration this morning, but it is difficult to tell because he makes a lot of airway noises. After that we had a brief consult with his Occupational Therapist who evaluated the finger splint she made last week and smoothed some edges per my request. I showed her the modifications I made with the bands and she said they were fine. Here is a pic of the splint:

I used some bandaid sticky wrap to keep the splint in place, instead of the bulky velcro wrap they had which fell off and scratched skin.

The splint is really just a piece of plastic material that has been heated and molded to his hand in the right shape. He doesn't like it much, because he likes to stroke his nose while sucking on his other hand and this impairs him.

After therapy, we walked over to the Congenital Heart Institute for our check up and eco-cardiogram. This test was the most important one he has had so far, in my point of view. This one test could be used to see whether he would need another open heart surgery or not. the veridct.....HIS HEART IS WORKING BEAUTIFULLY and his AORTA IS GROWING WITH HIM!!!! Praise You Jesus!! We have been praying for just this news! Dr. Dave was thinking that Asher would probably need another trip to the Cath-Lab to see how his heart was functioning (invasive procedure, but not heart surgery)...and even that wasn't needed. He wants us to come back in 4 months for a check up, but he said that if his progress continues like it is then he doesn't forsee another surgery anytime soon. What Heavenly news to a momma's ears. I couldn't wait to get on the phone to tell Matt. The doctor also said I could stop giving him the Diuril (diuretic used after heart surgery to prevent congestive heart failure) ....so another med Bites the Dust! Now we are down to 3 and I'm hoping that within another few months he will be down to just the Vit D suppliment to help regulate his calcium levels. Unless he is to be healed of that too....nothing is too big for my God!

Here is a pic of Asher getting his heart vitals read. He scored a 100 which is perfect! All of the wires look intimidating, but they are just stuck to little sticky tabs placed on his skin. He was funny looking up all startled at the ladies.

All in all, I'd say it was a wonderful day with some really REALLY good news! Thank you to everyone who has been prayer for our little warrior... it really does help!

Blessings!
~Erika~

A Trip To The Neurologist

Our little trip to the neurologist went very well today. In fact, despite the heat, the car didn't even shut off while driving...which is always a concern nowadays. Asher was sleeping peacefully when we arrived. I had done all I could to keep him awake until we got there because they wanted to read his brain activity while he was sleeping and we only had a 45 min window. Well, he didn't disappoint ...he just woke for a moment while they attached the electrodes to his head, but then zonked right back out and slept through the rest of the test like a dream. Here are some pics. They may look intense, but the test was really non-invasive, just a lot of wires reading brain activity and looking for seizures...which I don't think they found any (waiting for the doctor's official report)

Asher getting all wired up. He didn't mind this.

The gauze used to hold the electrodes in place...now that was another story!

He was like...."Oh geez, can we just get this over"...hehe ;)

Fine and dandy again! And just a few red marks for proof of his braveness ; )

We have another follow-up appointment scheduled for August 11'th, but I'm really hoping that the doctor will call me with results and allow me to ween Asher off of the Phenobarbitol. That drug has side effects which include drowsiness and disorientation and isn't a good start for a little guy trying to learn how to sit up and eventually walk.

Tuesday I head back over to the therapists for another oral motor evaluation and then on to the Congenital Heart Institute to have another Eco-Cardiogram done. This is the test which shows Asher's heart using a 3-D image. He has had them done before and we already know that it exaggerates his problem and makes a serious condition look even worse....but I'm hoping it will show a drastic improvement from before. Please continue to pray on these things! All that we have been working for with the eating and the reduction of meds will be reversed if he has to go in for another operation, not to mention the risks of the surgery itself. I'm just looking for fellow believers to agree with us in prayer that this little boy is going to be healed and not need anymore serguries, period!!!

~Erika~

Asher Update

We are just about ready to leave the house for the morning....perfect time to do a post right!?! It's off to the chiropractor for the family's adjustments and then we are heading over to Asher's neurologist to have his EEG done. Good news about today is that if the scan test doesn't show any seizure activity then we are going to try to have him weened off his anti-seizure meds. I'm really pushing for him to be drug free as soon as possible. All of the side effects to those meds, on top of the physical burden they are on a little body all equals bad in my eyes. Now I'm all for something that he honestly and truly needs, but I'm pretty sure he doesn't need the phenobarbitol or the antibiotics (which are only as a precaution anyways) and I would rather have him off of them.

So, hopefully I'll be able to post a happy blog about another med biting the dust...incrementally, since it will take 2 months to fully ween him off. But, thank God, it's a step in the right direction for my healthy little guy.

Tomorrow we go in for his oral motor/speech therapy to help his "sucking" muscles get ready to eat, and then follow up with his cardiologist to have another eco-cardiogram. Please be in prayer that his aorta has grown and has gotten better. We really don't want to have him go through another open heart surgery...and this will be one of the determining factors.

Blessings
~Erika~

Asher's "Early Steps" Update...

Early Steps is a program run through Arnold Palmer Children's Hospital which focuses on testing children's developmental progress and employing early intervention / therapies to improve low areas. The wonderful thing about this program is that it is state funded and it will pay the bill for treatments if you insurance will not! The ladies were all very nice and seemed well educated in each of their fields of study.

This is how Asher's tests results broke down: For grading purposes, the scale goes up to 115, but a score of 100 is average/good.

Using hands and body (Gross/Fine Motor Skills) - 95 Problems here relate to poor head control/strength which we can work on by adding more "tummy time" to his daily routine.

Eating, Dressing and Toileting (Self-Help/Adaptive Skills - 55 This one relates to the fact that he is tube fed and needs some oral motor therapy. We are seeing an OT next week relating to this and have been referred for 30 min a week for the next 6 months which is when he will be evaluated again.

Expressing and Responding to Feelings and Interacting with Others (Social/ Emotional ) - 95

Playing, Thinking , Exploring (Academic/Cognitive including pre-literacy skills) - 93

Understanding and Communicating (Receptive and Expressive Communication) - 95

Overall, he is right where he should be developmentally in a lot of areas....which is very reassuring.

He is still on the thin side when compared to other children his age, but when looking back to where he started, he is looking pretty good!!! Check out the meat on those legs!! ;) In fact, I think this will be the last time he can wear that cute little onesie that I like so much...it's about to bust at the buttons ;)

He is so precious when he sleeps...I just want to pick him up and squeaze him ;)

Well, that's it for now....gotta get Asher's morning feed started.

Blessings!
~Erika~

The Decision to Wait...

And no sooner had it begun and it seemed over! Matt and I have agreed to stop giving Asher bottles until we see the oral motor ladies again. For two mornings in a row now, he has aspirated thickened milk and had a tough time breathing through it afterwords. He still sounded a bit congested last night so we are thinking he isn't ready yet and don't want to force the issue and get him sick out of our eagerness for him to be able to eat. He truly enjoys it and that is quite a relief...I'm just praying that with oral motor help, he will be able to strengthen what is weak and continue to enjoy sucking until we can re-introduce oral feeds.

It is the best decision for him, but I have to say that I feel very little hope right now for ever being able to breastfeed my little boy. Please pray that my pumping schedule will become more regular and my milk will increase along with his demand for it. I'm having to supplement with frozen milk in the deep freeze right now and that is almost gone which worries me a bit.

Please continue to lift me up in prayer along with Asher's healing. I am feeling the weight of this situation lately and I don't want to give in to the pressure of feeling depressed and hopeless. The family doesn't need that and through Jesus, I don't have to be bound by it... but it is trying none the less.

Blessings!
~Erika~

Bottle Feeding Has Begun....but slower than anticipated

Asher likes to hold / stroke his nose when he is sucking on fingers or a paci. I think it is his way of self soothing...kind of like a baby kitten kneeding it's momma while it nurses.

I finally got the OK to begin small oral feeds and I tried Asher on his first bottle yesterday morning. He eagerly gulped it down, but I did notice him sounding a bit congested afterwards so I didn't give him any follow up bottles. I think I'm going to ease him into this slowly instead of just giving him 4 feeds a day. I don't want him to get fluid in his lungs which would halt all progress made recently.

Please continue to pray for his eating skills and that all the muscles involved in his mouth and throat would be strengthened and fully restored. Also for his kidney's and heart to be restored.

We have another eco-cardiogram coming up with in the next few weeks and I'm praying to see improvement in his aortic kink ...so much so that he will not require another surgery. I don't want him to loose anymore ground developmentally by being hospitalized again.

Good news....our Early Steps evaluation has been moved up so he will have a full developmental evaluation this coming Monday. They will be able to refer him to special therapists to help him in any areas he is lacking in right now. Specifically head control / Trunk strength and feeding issues. Praise God for Support!

I'll keep more updates coming. Thank you to all of you still reading this blog and praying with us for our little man's restoration! You are much appreciated!

Blessings!
~Erika~

Still haven't gotten the "Official" Ok about feeding Asher a bottle, but I hope that will come tomorrow. I really think he misses it ;( I did, however, get the test results back on his Kidney Ultrasound which was checking to see if the fluid around his kidney's had gone down. It has not...in fact it has increased. It also looks like the kidney stones he had from all the calcium supplements he received in the hospital have gotten bigger. We have been referred to a urinologist at Nemours to see if he has a blockage causing the fluid retention. Short and sweet.....pray for new kidneys (as Michelle sais). "New heart and new Kidneys" should do him just fine!! ;) God has come through on greater challenges than this... and my faith is for Him, but I feel like I took a hit with the news. Please keep me in your prayers...that I would continue to look on the side of Faith and not fall into despair. I feel it knocking and don't want to answer the door.

Thank you to everyone keeping up with our story and praying for our family. Your prayers are defenitely felt and charished.

Blessings!
Erika

The Results Are In....

I headed out to Arnold Palmer with Asher this morning to have his swallow study done and was surprised by the radiology staff's willingness to try and get ALL of his tests done today. I initially had to reschedule his kidney sonogram and voiding cystogram, which had been scheduled for later that day, because the barium they have him swallow would interfere with their ability to accurately see his kidneys. Well, they were very flexible and had us do the sonogram and stuff before the swallow study. What a blessing to have all of that done within one trip! Thank you Arnold Palmer...you rock!!! The highlight of the day was the much anticipated swallow study. We first met with speech and occupational therapists who evaluated his ability to suck, which was quite strong as we can tell from all Asher's videos, although his gag reflex is still a bit sensitive. Then they had me set him in a little padded seat, which held him upright, and I fed him bottles with barium mixtures of different thicknesses. Much to my joy, he took to the bottles right away, sucking AND swallowing. Their concern, and the main reason for the study, was to watch and see if he was aspirating any of the liquid while swallowing and he did a tiny bit now and then. He did better with a slightly thicker liquid (nectar consistancy) and a slow flow nipple. Their final report recommended small oral feeds 4 times a day to help Asher readjust to taking food by mouth and to further increase his muscle strength and stamina. He tuckered out quickly and couldn't suck for very long, but at least he was sucking! ;) I have to call his doctor tomorrow and make sure he agrees with their evaluation and then I can start giving Asher small doses of breastmilk which has been thickened with a commercial thickening agent called Simthick.

When I asked the therapist about things I can do to encourage him in being able to take to the breast later on, she said that I can place him skin to skin while I feed him and watch closely to make sure he isn't getting lazy while sucking from the bottle. A bottle gives up liquid regardless of correct latch/suck/chew/gum, etc whereas the breast will not, so by maintaining good feeding habits with the bottle it will make for an easier transition later. They want to see a followup study in another two months or so, which means that much more pumping for me, but we are getting closer to our end goal.

Praise the Lord for his continued mercy and goodness! Asher truly is a "Happy and Blessed" young man, just as his name describes. Thank you to everyone who has continually been praying for him and us. .. we are seeing your prayers work!!

Wednesday morning we have an appointment with his geneticist which should be interesting. Will fill you in later.

Blessings!
~Erika~

Swallow Study Tuesday.....and Asher Vid ;)

Time for Praise Reports!!! As most of you who are following Asher's miraculous progress should know, we have been waiting for Asher's swallow study to be scheduled so that we can move forward onto oral feeds. Well, it has been almost 2 weeks since his ENT appointment where they said his vocal chords were now fully functioning...and no call regarding the study. Well, I called again today to see if they had any news on when the test was scheduled to be and the file notes said July 15th. Yippee..it's great that they had the test scheduled, but not so good because it is over a month away. Well, I was on the phone with a great many different offices today during Joel's nap and right before my last call my phone rang and it was from Arnold Palmer. A nice young lady greeted me and sounded almost apologetic when she informed me that they had a cancelation in their office and Asher could move into that slot for Tuesday morning. YUP, that 's right.....tomorrow morning!!!! I can't describe to you how overjoyed I was on the phone...it truly made my day. I had been growing a little concerned about Asher's suck/swallow reflex if we didn't get him tested soon. Babies have a NEED to suck when they are little, but after about 4 months it starts to deminish and Asher will be 4 months old on the 23rd. Needless to say this test being moved up is a huge answer to prayer. I shed tears in my dish water last night as I cried out to the Holy Spirit, our helper, for breakthrough on this matter. Both Asher and I NEED to be able to nurse for a handful of reasons and I'm not giving up until we achieve it!

Please continue to keep Asher's swallow study in your prayers. That he would have no problem sucking from the bottle, swallowing, breathing and no refluxing!

I also spoke with the Arnold Palmer representative today regarding Asher's pinky finger. She said the doctor's report states that this is most likely something resulting from the length of hospital stay and not a mistake on the behalf of the attendants. I'm still not liking the image in my head of his little finger being all bent under the tape, but if it is something related to atrophy then I'm glad we caught it now while he is still soft and growing. So, he has been referred to go in for occupational therapy on his hand and to have a splint made up for him to help straighten it out. I'm just glad that it doesn't look to need surgery and that the hospital got me in to see the orthopedic which I was having no luck getting in to see due to the fact that none of them accept medicaid at this time. FRUSTRATING! So, Asher will be on the mend in that area soon. I will keep you all posted of his future progress ;)

Below are a few more recent pics of Asher boy:

Asher checking out his hand again. Facinating little apendiges aren't they ;)

Looking a bit inquisitive in this pic.

This is a little video showing how alert and active Asher is becoming.

Pinky Fingers and Willfull Outbursts!!!!!

Well, Asher's pinky isn't broke OR dislocated. It seems to be soft tissue that is making it curl up like that ...probably a short/tight tendon. I asked the doctor if this kind of thing just happens, or if it looked to be the result of an injury and he said in most cases where this presents in children, it usually takes around a year to show up. Since this is showing around 3 months, it could be the result of an injury....or just "one of those things"...it's hard to say. I am still leaning towards the side of it being injured because of what I saw in the hospital with it being taped down sideways, but I don't know how the hospital is going to see it. I am going to call them back today to see what this news means in regard to Asher's future hand treatments. The doctor prescribed a splint, as well as occupational therapy to see if they can get the ligament to loosen up. If the finger doesn't straighten out by the time he is a teenager, then they may go in and do surgery if it is still giving him problems. I'm just glad to finally know what we are dealing with here. I hated the thought that he could have sustained a broken finger...which would have been hard to do considering the cartilage to bone ratio of babies....they are very soft still.

So, end result....I have another appointment to add to weekly list. But that isn't all bad. I was actually enjoying my time away from the house (and my strong willed 2 year old) yesterday. It gave me time to breathe and get re-focused before diving back in to the battle of the wills...which seems to be playing out much more lately. I don't think it is because Joel is acting up more than usual....on the contrary, I think it is because I have just started to step back into the game.
For a while, I was so stressed out just trying to deal with what was happening on a daily basis with Asher that I stepped away from the plate when it comes to disceplining my son......in fact I think I was hiding in the dugout. Joel has been very pleasantly having his own way for a few months now and enjoying every minute of it. What changed you ask? Dr. James Dobson and Focus on the Family.....that's what brought everything back into focus for me and encouraged me to step back up and be the dominant parent to my son. So now times of conflict are more frequent....I'm more tired....but hopefully my son is becoming a more well balanced little man for the effort.

Keep me in your prayers. This kid is definitely a God given challenge to mold us, but it is only by God's grace that I'm going to survive this! ;)

Blessings!
~Erika~

A Good Report!

I just came back from Asher's first follow-up with the Neurologist and things are going better than expected. Since he hasn't displayed any seizure activity since early in his hospital stay, they are listening to my desire to ween him off of the Phenobarbital. We have an EEG scheduled the end of this month and that should tell us if he is still having seizures or not. If that is clear then we can start to cut back his meds. WOOHOO!!! Anytime we can eliminate a medication that just SHOUTS to the natural world how he is getting better! I remember a conversation I had with Asher's nurse, Bill, in the hospital before he went in for heart surgery. He told me to count the number of medication pumps he is on after surgery, then I would have a guideline for his progress each time I came in and saw fewer and fewer pumps ;) I feel the same way now when dealing with his meds. So far, we are through with the Methadone and now looking towards dropping the Phenobarb and possibly the Amoxacillin if his Kidney Ultra Sound comes back normal. That would just leave him with Vitamin D and Diuril (diuretic) ....and that I can handle...for now ;)

I'm just concerned that the drugs are going to handicap his mental and physical progress. I realized the other day that his EXCELLENT sleep cycle through the night might be connected to his phenobarb usage, since it can make you groggy, sleepy and a little disoriented. If it is connected, then I'll put up with less sleep if it is better for Asher in the long run....with God's help of course!!

Ash just woke up....gotta jet.
Blessings!
~Erika~

If At First You Don't Succeed.... Asher's finger part 3

After pretty much getting shut down the first time I called Arnold Palmer about Asher's poor little finger, I had backed away from pursuing them to get help. The woman I spoke with told me to go to my pediatrician and that is what I did. I was fortunate enough to get in the very next day and had him seen last Friday. Dr. Crispin then referred me to a handful of orthopedic surgeons and told me to call them and see who accepted my insurance. That is where I hit the brick wall. I tried Arnold Palmer Orthopedic and was told that they are not accepting Medipass at this time.... and all of the other offices on the list didn't take it at all. So, with options running out, I asked the last office on the list how much a consultation would be with the doctor, hoping to at least be able to pay out of pocket to find out what is wrong with Asher's finger. The receptionist was very nice when she informed me that doing so would be considered INSURANCE FRAUD! I guess if you have insurance, you HAVE to use it or it's a big NO NO. Who knew.......I didn't. So, the frustration level builds and the hope of restoration is seeming less and less likely.......until GOD! I received a letter in the mail Monday afternoon from Arnold Palmer. It was a survey that they wanted me to fill out about Asher's hospital stay and on the cover letter, it gave a phone number where people could call to discuss their child's stay. So, I decided to give it one more try and call the hospital to see if they could help fix things. I was referred to a woman who listened to my story about finding Asher's finger taped down all crooked, as well as an experience Matt recalled another time involving that same finger. She seemed very concerned and told me she was going to pull some strings to get Asher in to see their orthopedic hand surgeon right away. Before starting her "investigation" she wanted to make sure there was something indeed wrong with Asher's hand...and this would be FREE OF CHARGE!!! God is so GOOD!!! I couldn't even get an appointment to have my child seen by this doctor and now he is going to be taken care of lickety split and for not charge to me. Through this all, my intention was not to cast blame or get anyone in particular in trouble......I just want my son's hand fixed. We are a musical family and have some plans for those long fingers of Asher's, involving a bass rig and piano keys. When the whole thing came about with his finger not being able to fully extend, I was so upset, and now God has opened up a way where there was no way to have my baby restored. PRAISE THE LORD!

I still believe Arnold Palmer Children's Hospital is a top notch facility and this just proves it. I think I just spoke with the wrong person last week, but it was enough to shake my confidence in them regarding this situation. I'll keep you all posted about what the surgeon says. My chiropractor said it looked like a dislocated joint, which is what we are hoping for.

Today I take Asher in to the Neurologist for a check up. I have to drop Matt off at OHOP and then head over all by myself to this one so keep me in your prayers. I'm not use to driving around by myself with Asher in the backseat alone. I'll let you know what we find out. Asher had some seizure activity while in the hospital and I think they just want to make sure he isn't having anymore.

Well, that is it for now. I'm going back to bed before the little munshkins wake up. I just wanted to share our praise report and encourage people that God is continually working on our behalf to bring restoration and healing to the places where the enemy is seeking to destroy!!

Blessings!
~Erika~

Crooked Little Pinky.....part 2!

I took Asher to the ped today to have his finger looked at...and yup, now it is OFFICIAL. It is indeed crooked!!! But for real, the doctor said that it could either be a dislocation or an issue with a short tendon. We are both hoping for the dislocation because it would mean a less invasive repair. He referred me to a pediatric orthopedic surgeon to have them follow up with it and see how bad it is. Thing is...I called just about everyone on their list and no one takes medicaid. I'm waiting to hear back from the last doctor's office on Monday and I'm hoping that they will see him. If they won't then I'll have to just start going through the phonebook and see if anyone will see him.....last resort, we'll save up some money and have him looked at. I'm really hoping this doesn't turn into a big problem.....I just want the little guy back to normal. The doctor said that this really needed to be repaired because it could impair his learning how to write and may even lead to other joint problems.......so......please continue to lift him up in prayer. That the perfect doctor will see him and fix him up lickety split. Or, better yet, that God's mighty hand will touch him and he won't need an earthly surgeon anyways. I like that one better!

Here's a pic of his little finger:

The joint doesn't straighten out anymore than what you see. I'm amazed we haven't seen it before....

Blessings!
~Erika~

Asher Update and A Lunch Date!

So sorry for all of you waiting to hear how the ENT checkup went yesterday. The internet wasn't working this morning when I usually type up my blog updates....but now it is so here it is ;)

Wednesday morning came....finally! Just a little earlier than I had wanted...Joel woke at 6:30 and crawled in bed with us and cute as can be fell back asleep on top of us. VERY Unusually for him.....he never was one to cuddle in bed OR sleep with us. But today he did and we enjoyed the moment so much that we both overslept our alarms. So the rest of the morning was spent playing catch up and find the office but we did eventually make the appointment, with 1 minute to spare, no thanks to YAHOO maps..bah!!

Anyways, Matt and I were waiting in the room, trying to soothe Asher and fill out last minute paperwork when Dr. Kosko came in and stood staring at Asher for a few moments with a strange look on his face. Finally he said "how long has he sounded like THAT?" because apparently he was louder than the doctor had expected him to be. I said "for quite a while now....almost since coming home". The nurse walked in then with the "scope'y thingy"...technical term of course....and they proceeded to stick the scope tube up Asher's little nose and down his throat so that we could see his vocal chords. The screen was blurry for a minute while they moved the scope into place, but then we saw them. Two of the most beautifully, FULLY FUNCTIONING vocal chords I have ever laid my eyes on!!! We only got to see them for a brief moment and then the tube was removed. Dr. Kosko told the nurse to schedule the swallow study at Arnold Palmer and told us to follow up with him in 3 months. Then, in a whirl, the nice doctor was gone.
Matt and I were having our own little party in the room while we gathered our things. I was so happy as thoughts of soon being able to nurse my little boy filled my head.

We were in and out of the office within 20-30 minuts....the fastest check up I have ever been to with Asher. This gave us a couple hours worth of free time before our next appointment with the GI doctor, so we decided to go spend some time together at the Orlando House of Prayer (OHOP). It was nice being able to just relax in God's presence for a while. I think I'm a little high strung and need time like this more regularly to unwind...at the very least.

Asher in the OHOP entryway. We want to get him into that kind of prayer environment on a regular basis. I was reminded of the verse in Psalms 92 and the understanding it gave me regarding the keys to Asher's full recovery. We are seeking God's wisdom on how to place him like a Samuel in the "courts of our God".

Psa 92:12-15 The righteous shall flourish like the palm tree: he shall grow like a cedar in Lebanon. Those that be planted in the house of the LORD shall flourish in the courts of our God. They shall still bring forth fruit in old age; they shall be fat and flourishing; To shew that the LORD is upright: he is my rock, and there is no unrighteousness in him.

After spending about 2 1/2 hours at OHOP we headed back towards orlando to grab a quick bite to eat before our next appointment.

Matt and I ate lunch at Numero Uno, a Cuban restaurant just down the street from Arnold Palmer on Orange Ave. Our friend, Carolyn, recommended it to us saying it was cheap AND the best Cuban food she has ever tasted! With a glowing review like that, we had to try it out. It was really nice...Matt and I don't get a chance to really have dates anymore. I know we need to take time for ourselves and invest in our relationship....we have heard it all before....but with the events of the past few months, that has been an after thought. So, today was just nice to get away and enjoy some good food togther while Asher slept quietly and Joel was napping at "Mamma Glenna's". We both ordered the lunch specials: I got Beef Stew and Matt got Roasted Chicken, both came with a side of yellow rice and a small salad, then we added a small side of black beans. The stew was the best in my opinion!

The next appointment was the GI doctor and he alleviated my concern about some yellow liquid backing up in Asher's G-tube (feeding tube). It was just stomach acid....it just looked like a lot to me, but I think Asher is going through a growth spurt and was just burning through his milk doses faster than before ...and was just getting HUNGRY. So, we upped the amount of his feeds.

So, there are the updates on my angel boy! He is continuing to do VERY WELL at home and I am so excited about the prospect of being able to nurse him soon!!

Please keep that in your prayers....that he will re-learn to nurse effortlessly and we both have no more problems in that department with yeast.

Also, please pray about Asher's little right pinky finger. Matt noticed last night that it doesn't want to straighten out more than half way. I know for sure that it wasn't like that before he went into the hospital and I'm concerned that it may have gotten dislocated while he was there and then healed wrong. I'm waiting to hear back from the social services worker about how to follow up on getting that fixed.

Blessings!
~Erika~

ENT Checkup and Paci Tips

Today is the long awaited ENT appointment for Asher. I have quietly been champing at the bit to meet this doctor and see exactly how Asher's vocal chord progress is doing in regards to possibly being able to nurse. It has been wearing on me lately....the desire to hold my little guy tight and nurse him....to love him back to health and wholeness. I feel like that beautiful bonding time has been taken from us and I so want to see that redeemed and restored. I'll keep you posted on the verdict.

Please continue to pray for Asher's swallow mechanism to be fully restored....and for him to easily be able to nurse without any hindrances!

This simple little trick has given us so much more sleep. Just stick a small washcloth through the ring on a pacifier and let your baby hold it in their own mouth more easily!

Blessings!
~Erika~

A Dream and a Warning for Asher

While visiting with my brother's family at our parent's house this weekend (he was down from Alabama), my mom told me about a dream she had the other night that had to do with Asher. I had her email it to me so I wouldn't forget it. I always pay attention to when my mom dreams because she so rarely does it that when she DOES remember one, it's usually has a purpose! Here it is, strange, but good:

Morning of May 24th

"I dreamed that Asher was back in the hospital. The doctors were planning to do surgery on him that day to cut off his ears. I wondered why they would do that and their answer was that it would make him hear better. There were some others there who also thought that was stupid and told the doctors to at least wait until his parents came. Then Erika came in and she wondered why they hadn't done the surgery yet. I was surprised by her attitude and as the dream ended, I asked what it meant. I heard the Lord say that this child needed more than man's wisdom. Erika is in a place where she is dealing with a lot of doctors and it is easy to get overwhelmed with their info and begin to let them make all the decisions. I felt like the Lord was warning that you especially need His Wisdom right now and to keep praying."

~Momma Glenna~ (Joel's name for his Grandma's)

So, no chopping off my son's ears....check! But seriously, this was a needed check for me. With my first son, healthy as an ox that one, I took what the doctor's said with a grain of salt because I knew there were also naturopathic and homeopathic alternatives available to me that Western medicine was unaware of. But with Asher, there is still so much about his condition that I am clueless about, that I am more hesitant to find the natural answers to his health challenges and more dependant on the doctor's opinion. I have been feeling this strain and haven't liked it but felt I had no real other choice. I have a pretty good pediatrician for him who is more natural minded in her treatments of common ails, but it is so difficult to get in to see HER....so far I've ended up with the other doctors in her practice and I don't feel like I'm getting that little extra something that I need for my son. The thought had crossed my mind about taking him in to see an herbalist that comes highly recommended by two of my friends but I was again hesitant, this time because it would require cash out of pocket. But, since hearing my mom's dream, I'm really thinking about persuing it further and just have faith that the finances will be there when I need them to be.

The more I am around Asher and see the grace and mercy that surround him and his health challenges, there isn't a doubt in my mind that this is a very special little boy.....a dear one to God's heart. He is here on this earth, at this time, for a purpose and I feel I owe it to him and to God to make sure he is properly taken care of and not just another one lost in the medical systems of man.

Please continue to pray for his full healing and restoration in regards to his 22q11.2 deletion syndrome, that he have a new heart and kidney's and a brilliant mind, not touched by any mental infermity. We are standing in faith for these things and believe he is healed of the Lord and walking out a progressive miracle!

Blessings!
~Erika~