Category Archives: Special Needs

First Day of School


And, we’re back!  I have determined it is much easier to blog about children you don’t have yet but desire terribly, than it is to blog about the ones you have and must clothe and feed daily 🙂  That being said, I’m overjoyed to be on the “busy doing” end of the spectrum where time and energy to blog are diminished, but the laughs and messes and kisses virtually wipe out all memory of the “busy waiting” phase.

Anyway, Glory had her first day of school!  But this statement requires explanation.  In December Saige started talking to Miss Betsy, our developmental therapist, a skill she had been hiding from Betsy for months.  This led to Saige being dismissed from First Steps developmental therapy.  Shortly thereafter, she met all the goals set for her by Miss Kendra, the physical therapist, which meant she was done with PT as well!  Betsy and Kendra continued to come provide therapy for Glory up until the week before her birthday, February 24, at which point Glory aged out of First Step services.

In order to receive speech and physical therapy, Glory now attends the school system’s developmental preschool which by God’s grace is housed at the elementary school that Emet attends.  She is enrolled in the afternoon class, which is from 11:40am to 2:30pm Monday through Thursday.  Jamin has been attending Little Seeds Preschool, which is not far away, but begins at 11:45am and ends at 2:15pm, MWF.  So, we made the difficult decision to move him to Parkside as well for the remainder of Pre-K.  This means that on M-Th, Parkside has 3 Magnuson kids, and I only have 1!  It is so weird.

Both Jamin and Glory started at their new school last Monday, on Glory’s 3rd birthday.  Glory loves going to school, and is wasted by the time I get her home.  She tries telling me a little about it, but it is difficult to understand when I don’t have much context to go on.  Jamin seems to like his new class alright.  He misses his friends at Little Seeds, and sent them a letter last week.  He isn’t talking about any friends in particular, but he loved the dental unit they did last week and came home with some cute crafts.

For me, this new system is working out well.  Saige gets to talk to me all she wants and more 😛  She wants to know when she gets to go to school, but is content to do the grocery shopping alone with Mommy.  Hopefully we’ll get used to these changes soon and incorporate some play dates into our schedule!


Cleft lip/nose surgery


The last three days have been full- full of packing, preparations, surgery, and recovery.  I spent a fair portion of Monday fretting, and sensing this strange feeling that wasn’t quite worry, and contained an element of grief.  I don’t like taking my baby to be operated on, and to have her beautiful 20131008_080037 (2)face cosmetically altered became difficult there in the end.  Knowing I will never see that big smile I’ve come to love is sad to me, and put me on the verge of tears more than once.  But I asked for prayer, and friends and family prayed for peace which became the pervading sensation.  I felt peace as we loaded up the car at 5 AM Tuesday, I felt peace as we registered Glory at the hospital at 6:30 AM, and still as we waited in the pre-op room with her for the next 2.5 hours, and then as she was taken from us, I think she, too, was at peace because though she cried out once, the nurse reported that she did great, took the mask, and drifted off with no problem.  We felt peace and complete absence of anxiety (which on this occasion seemed noteworthy and not merely logical) as we waited during her 3 hour procedure to be completed.  Over and over I was reminded of Jesus’ words recorded in Matthew 14:27, “Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.”

When Glory had been moved to recovery and we were taken to see her, she was resting quietly in the nurses arms.  Upon seeing us, she1383436_10153328344880352_1476781927_n (2) began to cry my name, twisting up her swollen, slightly bruised face that now has a dark line of tiny stitches from the base of her nose all the way down through her lip.  It broke my heart, and again relief and grief mixed as I cried with her.

Glory is a great patient.  She may get mad, she may scream, but she doesn’t fight and make it difficult to do what needs to be done.  As she was transported to her room for observation for the night, she cried and aggravated the fresh incisions, causing them to seep (which, by the way, is nurse for ‘bleed!’).  She had to be cleaned up, and kept telling us she was all done.  In fact, each time a nurse came into the room, she told them, “No, all done.  Bye bye.”  But she was compliant, and amazingly helpful when she wanted to be.  When we were finally alone in her room, she said, “Home,” so we told her she would have to drink water first.  So the little girl, with a sore, bloody lip, promptly downed 6 oz of water and then repeated, “Home.”  She was not happy about being told that she would still have to stay the night, and retaliated by rejecting fluids for the next 20 hours.

Her afternoon was spent snoozing on either Mommy’s or Daddy’s lap, crying only when we moved her or put her in the bed for any reason.  We were blessed by a visit from our former youth group girls, Mary and Dani, who are IUPUI nursing students.  The girls picked up dinner and some snacks for us, and filled us in on what God is doing in their lives.  Truly I could ask nothing more than for God to work in my children as He has done in these girls.  How they cause me to rejoice!

Around 10 PM, Glory finally co1381209_10151764201519247_454447796_n (2)nsented to sleeping in the bed, so Jesse and I were able to crash for a few hours, waking every so often to see Glory’s nurse giving her pain medication or providing some other care.  At 4:30 this morning, Glory decided she had had enough of the bed and wanted to be held.  Not long after 6 AM we were visited by Glory’s surgeon, Dr. Flores, and shortly there after, by other members of the Plastics team.  Dr. Flores said the only thing keeping us in the hospital was Glory’s fluid intake, so we earnestly encouraged her to drink!

We began to see Glory act like herself around 8 AM.  She colored with Daddy, looked at books, played with stuffed animals, and would close her eyes and ask, “Mommy, (where) are you?” then open them and act surprised to find me there changing her diaper.  She started talking about anything and everything, repeating words and talking about home and her siblings.  Jesse said he thought she was really enjoying being the only child for a day 🙂

By about 10 AM, Glory drank her required 4 oz of juice, and we were free to go as soon as the prescription fophoto (2)r her pain med arrived, and the doctor signed the orders.  At 11, we were on our way out the door!  We arrived home in time for lunch, and greeted by “Welcome Home Glory” in chalk on the driveway.  The boys came out, eager to see what Glory’s lip looks like, and Saige pretended not to care at all that we were home, the little stink!  My mom is in town this week to help out, and so Emet, Jamin and Saige stayed home with her while we were away.  It sounds like they had fun!  Chalk, dress up, going to the park- good times!  Grandma is super tired, though, and barely made it through the boys’ bedtime story tonight.

From here, we keep Glory’s incision clean and free of clots.  She is wearing restraints that prevent her from moving her elbows so she can’t touch her face.  She is to eat soft foods for at least the next week, and may only drink from an open cup, so no sippys.  Next Tuesday I will take her back to Riley to have the stitches removed, which will take place under anesthesia.  She is taking pain medication every 4 hours, and will hopefully sleep well tonight so we can!  She will wear her arm restraints for the next 3 wee1393214_10153331957265352_487064218_n (2)ks, and have a follow up appointment at that time. All the children, and even the dog, have been given strict instructions not to touch Glory’s face.  I may have to put her in a bubble for the next few weeks!

Thanks for your continued prayers.  Recovery will take some time and effort, and is always challenging when there are 3 other active children in the house.  We know that God is with us, and will protect and heal Glory even as normal life is bumping and crashing around her.  “Peace… Do not let your hearts be troubled and do not be afraid.”  Peace.

Dental surgery


Glory handled her dental surgery on Wednesday like a champ!  Thank you for praying for her!  We arrived at the hospital at 5:50 AM, and got all the paperwork and pre-op stuff taken care of.  We prayed with both the dentist performing the procedure, and with the anesthesiologist.  They took her back at 7:30, and she finished up around 9.  Dr. Steinmetz, Glory’s dentist, said it took 30 minutes for the anesthesiologist to find a vein in our little girl!  Poor baby!  Thankfully, she was already gassed prior to the poking, prodding and pricking.  The procedure itself went really well, and the tooth Dr. Steinmetz was most concerned about did not have to be extracted.  In the end, Glory had 4 baby root canals and 8 caps.  Dr. Steinmetz diagnosed her as having enamel hypoplasia, which means the enamel did not properly develop on her baby teeth, which could have been caused by malnutrition, illness, fever or infection during the time of teeth formation.  Her permanent teeth will likely be just fine, but these baby teeth are very susceptible to cavities.

Glory and I arrived home around 10 AM, and she slept until 2:15.  Once she was up, she snuggled a lot, played a little, and soothed herself by sucking the back of her hand in true Glory fashion.  We were blessed to have lots of help during the day- one neighbor did both directions on our preschool carpool, and another walked Emet home for me, while a family from church brought us dinner, with a special assortment of soft foods just for Glory.  We are thankful for God’s provision in even the tiniest details.

Here's our Glory-girl, playing with the camera while waiting for her turn in the OR.  Love that grin!

Here’s our Glory-girl, playing with the camera while waiting for her turn in the OR. Love that grin!



Today was busy, with lots of up and downs, and left me mentally and emotionally exhausted!  It would have been a challenging day in and of itself, with two girls feeling under the weather, a PT appointment, doctors appointment, and a little boy crazy excited about his 5th birthday next week.  But in addition to all that, I was on and off the phone with doctors offices for a good bit of the day, getting alternately good and bad news.  The final result is that Glory will have dental surgery performed by our pediatric dentist on September 25, and her lip surgery will go on as scheduled on October 8 at Riley.  The plastic surgeon said no to doing both procedures in one day, but that it should not be a problem for Glory to undergo anesthesia an additional time so long as there is at least a week between the procedures.  So there we are.  We did not have to push back the lip surgery, and things are set up and ready to go.

I think what is most incredible to me about today is that our church has been doing a 40 Days of Prayer, and today was the day that the church was to specifically pray for our family.  And Who do you suppose orchestrated that?  It certainly wasn’t Leo, our church intern who composed the 40 Days of Prayer booklet we are using!  I can’t imagine what this day would have been like without so many lifting us up before the one Who Sees Me (Gen. 16:13).

We appreciate continued prayers for Glory and her health.  She has a cold, a slight fever, and is a bit grumpy (not as grumpy as Saige, however, who has the same symptoms).  Glory must be cleared by her pediatrician for the dental surgery to take place, and illness will do us no favors.

Thank you, and praise the Lord!


Trip to the dentist



It’s been a while.  Sorry!  Lots going on, lots to report, but really only one issue I want to address here tonight before I turn in.  Glory is scheduled for her lip repair surgery at Riley Hospital in Indy on October 8.  This is an answer to prayer because it lands right at the beginning of Emet’s 2 week fall break, so we don’t have to worry about school for the first phase of Glory’s recovery.  My mom will be coming from Colorado to help us out, and we’ve been looking forward to the surgery as the last big medical hurdle this year.  At least we were, until we visited the dentist today.

Glory has 6, possibly 8 cavities.  Can you imagine?!  My poor baby!  It is an incredible amount of decay- every one of her back teeth are affected.  Repair requires anesthesia, and must be dealt with so that the bacteria does not infect her healing lip.  I made calls today to the plastic surgeon to see if he would/could share the OR with a dentist on the 8th so both procedures could happen at the same time.  I also called the Riley Dental Team to see if it was even possible to do all that they need to do to be ready for a procedure on the 8th.  In both cases, the person on the phone needed to ask someone else, and both said they would call back tomorrow.  If using the Riley Dental Team is not an option, our local pediatric dentist is willing and available to do the procedure at the hospital in our town, but we have to get it scheduled.  There isn’t much time.

And so, we pray.  And we ask you to pray, too.  To our minds, the best option would be for Glory to receive both procedures at the same time on Oct. 8.  However, God knows best, and that is what we are asking for.  Please pray that all these details would come together in the best possible way, for our daughter Glory, and the glory of our God.  Thanks for being with us on this!  We expect great things.

Summer therapy/development update


Summer is flying by!  With Emet starting school on August 5, we’re fast approaching the end of it!  In this season we have seen many changes in our girls, and we are so encouraged.

Glory and Saige have been receiving therapy through First Steps for three months now- one hour each of physical therapy (PT) and developmental therapy (DT) each week.  Our PT recently recommended Saige reduce her therapy from 4 times a month to 2.  Each week she comes, our PT is encouraged by Saige’s progress in holding her head up and level, turning her head easily to the left as well as the right, and gaining strength in her trunk to support appropriate movement.  Each week our PT tells us Saige is better than the previous session, I have to give praise to God because only He and I know how little I do the appropriate stretches with her!  We try to incorporate strengthening exercises into play, but still it seems that her progress is disproportionate to the amount of work I put into it.  Rather, it seems more likely that her advancement is the result of the prayers of faithful men and women of God, who often lift up our girls and their health issues before the Great Physician.  I praise God both for His people, and His healing hand!

Glory continues to receive PT 4 times a week.  This little girl is astounding.  While she had her bandage on her arm from hand surgery, she took to scooting on her bum across the floor, but since it has come off (on June 11), she’s been working back towards a crawling position.  Her arms are still rather weak, but she will get up on her knees and elbows to crawl a bit.  Sometimes even voluntarily!  More and more I see her sitting on her knees and leaning on her hands, like she’s going to take off any second!  Over the last weekend, Glory pulled herself up to standing in her crib, and yesterday she pulled herself up on the coffee table.  Prior to this she would whimper and whine about being left to lean on the coffee table herself, and I never even suggested she stand in her crib.  She loves to ‘walk,’ holding onto our hands for support, which prompted our PT to move forward with leg braces.  Glory was measured 2 weeks ago, and will probably be outfitted with this new hardware sometime next week.  We’re still waiting for insurance to approve her lip surgery….

DT happens on Wednesday afternoons, and is like a little breath of fresh air for me.  The girls love their DT (and their PT, for that matter!), and plop themselves down in front of her, ready to see what toys and books she has for them in her bag.  She works mainly on vocabulary building, so there’s lots of playing, repeating, and modeling.  While our DT is there, I can sit in the background and get laundry folded, do some meal prep, and occasionally reply to emails!  The girls seem to be more focused with fewer distractions, which means it’s helpful for the boys and I to clear out!  Glory is trying to repeat more and more words.  Yesterday, she told the DT, “No,” she did not want the DT to count the puzzle pieces as Glory put them away in their bag, Glory wanted to do it herself!  So the DT let her make an “uh” sound each time she put a puzzle piece away, as though she was counting.

Saige, well, Saige is now a regular jabber box.  She uses around 50 words, and I’m hard pressed to say something she won’t understand.  It is amazing!  Recently she pointed out the window where the sun was shining and said, “Outside. Light on.”  One day she pinched the flesh of her palm in the door so that she was stuck until the door was opened.  She whined a little to get my attention, but when I asked her what was wrong, she stopped and said, “Door.”  So I opened it, released her, and she went on her merry way.  Another day, she was playing with her baby doll, tapping its toes together while she sang, “Toes, toes, toes, toes.”  Then she stopped, bent down and touched her toes, yelled, “TOES!” and went back to singing and tapping the baby doll’s feet.  She is full of surprises, and repeats words like a parrot.  All this after only 6 months of exposure to English.  I think we may have a little linguist on our hands!

During therapy, the boys are usually redirected to another part of the house where they are less likely to distract the participants.  They’ve really handled this well, and content themselves with playing with the therapists’ toys after the session while she is writing up her notes.  It was a real blessing for them to spend the latter part of June and early part of July with their grandparents in Colorado where they got to do “big boy” things, and life did not revolve around baby girls, therapy and medical appointments.

I know the blog has been a little quiet, but life is certainly not!  Thanks to those who pray for our family, whether you know what is happening or not!

All is well


Everyone under 9 years old is in bed (the dog is 8), and sleeping.  Praise God!  Our day was eventful, but so, so blessed!

Last night at about 9 Jesse and I decided to change our plans and both take Glory to the hospital.  It seemed everyone we talked with thought I ought not to take her alone, and we decided that maybe they knew something we didn’t.  After all, this is our first surgery.  So, we called up two dear families in our church to see if they would together care for our other 3 kiddos, and we are grateful for the loving way the Fulks and Smiths (Ilers too!) served us and our kids today.

It was weird driving up to Indy today.  I just kept thinking, “I’m taking my daughter to the hospital to have her thumb cut off.  What???”  Of course there’s more to it than that, but it was a strange thought, and a strange feeling.

We arrived at Riley early, thanks to Dave Iler picking up all the Magnuson children not having surgery today and taking them to the Fulks house for us.   It was an odd thing to walk through the hospital with just one child.  Jesse carried her, and I felt like such a tag-along walking with them, only carrying a diaper bag and our lunch.  This was the first time that we can remember the parents outnumbering the kids.  When you’re used to 4, having 2 parents for just 1 seemed a little, well, silly.

Pre OP

Pre OP

Anyway, we got Glory checked in, and were called back to our room at 10:15, about 15 minutes ahead of schedule.  We signed paperwork, the nurse took Glory’s vitals, and we changed her into her gown.  We were told she’d go back at noon, her hand surgery would take about 45 minutes, then having her ears cleaned and tubes inserted if necessary would take 10 minutes, then she’d need another 30-45 minutes to wake up, at which time we’d get to see her.  By our estimate, that put her waking up just before 2 PM.  before she went back, we were to see both the hand surgeon and the ENT, and a Child Life Specialist was supposed to come in, make friends with Glory, and would go with her to the OR using an iPad to distract her from the separation from her parents.

At 10:50 or so, the hand surgeon, Dr. Mih (say ‘me’), came in to give us an overview and answer questions.  He left, saying they were getting ready for Glory, and a nurse would be in to get her later.  At 11:15, the nurse came in, verified that Glory was Glory, and that the procedures in her file were the same ones we thought we brought her for (not a bad idea).  Then she asked Glory if she would come to her.  Glory did, and the nurse said, “Let’s go!”  So we kissed her, and sat down as the nurse carried Glory out of the room.  We could hear Glory and the nurse outside the door, and we just looked at each other and asked, “Did she just go for surgery, or is she doing something else?”  When she didn’t come back, we decided she must have gone to be prepped for surgery.

We had been instructed that one of us was to remain in the waiting room at all times so that when the doctor was available, one of us would be there.  So, we sat and read in our little room, which was decorated with Toy Story characters, until about noon.  Thinking that she would probably have just gone into the OR, I suggested that Jesse go out and eat his lunch (no food allowed in the waiting rooms), and then he could go get himself some coffee and me some chai (drinks were permitted).  He agreed, and then I suggested an alternate plan: I would go eat first, that way when he got back I could enjoy my chai.

So that’s what we did.  I left, and returned 15 or 20 minutes later only to find out that Dr. Mih had been in, said everything went well, said he did have to use a pin, and gave additional instructions.  Then, also while I was out, Dr. Morgenstein, the ENT, had been in to tell us he was about to clean her ears and would insert tubes if he saw any fluid at all.  So basically, I missed everything!  Jesse didn’t go eat, because Dr. Morgenstein was due back any minute.  When he did come, he said there was some nasty fluid in there, so she got the tubes, and then he gave us instructions for her care.

Drugged, but with Daddy!

Drugged, but with Daddy!

Maybe 20 minutes after that, a nurse came to ask us to come to the recovery room because Glory was mad and did not like the nurses!  She was fighting them, and they couldn’t tell if she was in pain, or just angry and wanted to see if she’d calm down for her parents.  Glory is such a daddy’s girl, I didn’t even bother trying to pick her up, and Jesse scooped up our angry, drugged little girl, and she cuddled right down on his shoulder and went to sleep.  The nurse said, “She just needed some vitamin M and D- Mom and Dad,” and then sent her back to our room with us to finish her recovery there.

After a 30-40 minute nap, she opened her eyes and jerked up her head at the mention of water.  She slammed almost her full sippy, and was released to go home!  Jesse carried her out, and it was such an amazing thing to see her noticing the different sounds as we walked to the parking garage- elevator bells, the sliding doors, and construction equipment all attracted her attention in ways they never have before.  I had been warned that she might be afraid of new sounds and their volume, but there was no sign of fear (even at home- the noisiest place we go!).  She did surprise us, however, as we heard her repeat sounds that she hasn’t repeated before, like “og” for “dog.”  We expect this little girls vocabulary to take off, now that she can hear properly.

Checking out the bandage!

Checking out the bandage!

On the way home I rode in the back of the car with her, a little concerned she might get sick on or mess with her bandage, which is a soft wrap that must stay on for the next 3 weeks.  She was sleepy, and trying to suck the back of her left hand, so I removed the small wrap that was covering the place where her IV went in.  After I removed it, she offered me her right hand so I could remove that bandage too.  I told her she was going to have to get used to that one for a while!

At home she took a short nap and joined the family for supper, feeding herself with her left hand as her right was bundled into the sleeve of a long-sleeved bib with a rubber band around the bottom.  She acted like herself until bedtime, when she hardly put up a fuss when I put her in bed 🙂

Each step of the way we are reminded of God’s goodness to us.  His goodness in leading us to this precious little girl, for providing her with the most important of her surgeries before we even met her, for allowing her to attach to us quickly so that her daddy was more comforting to her than pain medication this afternoon.  What a blessing each of these things are!  And His loving kindness goes even further to, in just under two weeks, arrange the schedule of Glory’s ENT to be available to deal with her ears today so a separate appointment was not needed and she didn’t have to go any longer with her limited hearing.  We are awed by God’s mercy to our family.